The Day After.

Well, I decided yesterday morning that I was going to try to enjoy the day with my kids who wanted to go to Great America. So I took a Motrin before going to help with the pain and inflammation and we went. I wore SPF 50 sunscreen and long sleeves and my big floppy hat to keep the sun off my face and head. I did use a wheelchair off and on. I tried to walk as often as I could so I'd push it for about ten minutes at a time. It was good because I always had a soft place to rest out of the sun. Unfortunately, that really didn't matter. Today, I awoke to pain and swelling and this fiery pain on my face unlike anything I've experienced before. I reached up to rub my face and almost screamed out in pain. There are tiny blisters all over my face that burn and hurt so bad! Feels like third degree burns. I took pics of them. I've had two or three of them before, but never all over my face. I've also got spots of burning pain here and there on my body. Center of my back etc. I've had this before, I was told it's fibro.

Anyway, Not sure if this is Lupus related or not...so if anyone can tell me the answer to that (if they've ever experienced this) I would appreciate it greatly.

Gentle Hugs :)

Heidi

What's been goin on.....

Hello everyone, sorry it's been a few weeks but I have been uber busy with my daughters College app's and Scholarships lately. Let's see, my little guy DJ turned seven on the 29th of March. WooHoo! We took him to Great America since it was opening day. We all have passes so it was a cost effective birthday too :) It was pretty hot that day "which I wasn't expecting" so it was a rough day for me. I walked in and spent about 20 to 25 minutes on my feet before the pain hit. My legs and the arches of my feet were screaming! It was like my body was touched by the sun and it caused all my other symptoms to explode onto the scene! I couldn't really walk anymore. There was no way I was going to make it around the park so my Joe went to the front to get a wheelchair. They were out! I was in trouble. I spent the better part of the day on shady benches while everyone else ran off to play. Seems I remember the exact same thing happening to me at Disneyland a few years ago. I would've gone home, but it was my son's birthday and I didn't want to ruin it for him. My back was screaming by the time I got home and I had blisters on my face and chest. NICE. Now.... I went to the neurologist a two weeks ago and was told that I have Hashimoto's disease. I was not aware of this but apparently, she diagnosed me two years ago. Hmmph. So I have a memory test this week and a brain scan next week. She is looking for the reason for the memory loss, tremor and involuntary jerking. I started taking vitamin B12 and D3 also, as I apparently have a deficiency. Hopefully that helps something. My gen prac says that the foot pain i'm experiencing is plantar fasciitis. He prescribed me Diclofenac for pain (which I have yet to fill) and told me to get some good orthodics. Then two days ago, I went to my dermatology appointment and the doctor found a suspicious lump on my left cheek. I now have a hole just below my cheekbone, with nasty stitches sticking out. Bleck! Sooo...as you can tell. Life is good! :) I am alive and mobile so I guess I can't complain. It's just life as usual for now. Could be worse.

OH!! By the way!! Please click on the (My hero is my angel) thumbnail to the right of the blogs. It is a link to my teams WALK FOR LUPUS NOW website. Help us if you can! Be a miracle in a special way and help us survive this battle! Thank you!
ONE LOVE! ~Heidi

Itchy palm of left hand with small lumps

My left hand has been killing me for the last two days. It itches so bad and is a bit painful if heat is applied. Cold is the only thing (topically) that helps the itch and pain. There are several small lumps beneath the skin there. They are center of the palm just above the wrist. I finally started looking on the internet for others who suffer the same issue and lo and behold, it is also a symptom of Lupus! SLE to be exact. I would never have placed this as an autoimmune condition. Just had to post this because I was shocked to learn it was.

Alternately, I am dealing with serious foot pain as of late. It feels like the tendons are shrinking or shortening. When I walk, it feels like I am hyper extending them to the point they may snap like an old rubber band. It really hurts! My Momma had a similar condition where her arms curled in as did her hands and they had to be forced open because of how tight the ligaments were. She ended up with drop foot as well there in the end. So I know the risk of no treatment but I also know that if you don't use it, you lose it. My Mother was pretty much immobile. I am doing all I can to avoid that happening. Back to the foot thing, at the end of the day when I finally sit to relax, I get what feel like charlie horses in my feet and they hurt bad. My doctor gave me an anti-inflammatory pain reliever prescription called (Diclofenac). He said it's similar to Motrin. I looked it up and it has some frightening side effects and circulatory warnings for those who have suffered heart attack, stroke and prior blood clot. Sooo....that being said, and with my history of pulmonary embolism, I've decided not to fill this prescription but rather take Motrin instead since he said that was the treatment/result he was going for anyway.

I know, I can be a bit stubborn at times, but this is MY BODY that I have to live with for as long as I possibly can. I have no advocate but myself.. I would like to have my functions and ability to LIVE well for a long time. If I feel that a treatment may be a (benefit does not outweigh the risk) scenario....I just won't take it. That's where I'm at with the steroids too. I've done my best to incorporate multiple anti-inflammatory foods into my daily diet. I also try to exercise when I can. No matter how little, I do what I can each day. I also do not take pain medication unless I am dying!

Swelling/Edema and visual issues

I have been a little concerned as of late about the swelling that I've been experiencing. I dont know how to take it for sure because I've had bladder surgery and it may or may not have changed the way or frequency of urination. Also, I am just so darn swollen in the morning that some days I can't even open my eyes! It's pretty bad. I itch a lot on the neck and jaw line to the point I could literally rip it off! This morning I couldn't open my eyes and my skin felt tight and full and I had some mild chest pain. So I took my blood pressure. It was 116 over 80 with a pulse rate of 69. An hour later, after the swelling subsided a bit and the chest pain stopped, I took it again and it was my typical 107 over 67 with a pulse rate of 69. That's pretty significant if you consider that its 10 points + above the norm for me. I have also been experiencing some serious fatigue and right flank pain. Not sure what to make of that either, but I'm hoping that by keeping this blog, eventually we will find the significance. I will be discontinuing salt use for a while to see how it effects me. In the meantime, I have included images of the swelling I had this morning. The right side was more severe today than the left.

Blurred vision in both eyes. Unable to open fully

Couln't see from Right eye at all yet

 

Also developing red rash on face

Notice severity of Right side

Forcing eyes open

 

Forcing eyes WIDE open

 

I started looking up causes for swelling/edema in Lupus. All I could find had to do with the kidneys. Scary stuff!

Kidney Disease

Treatment and Therapy

Treatment for lupus nephritis must be individualized to the needs of the specific person. All of the following must be taken into consideration:

• the amount of edema (swelling)
• urine abnormalities
• amount of protein in the urine
• reduction of kidney function
• findings of the kidney biopsy.

Diuretic agents may be used to help eliminate excess fluid. Anti-hypertensive drugs can control increased blood pressure. Anticoagulation drugs are used in case of complications arising from blood clots. Changes in the diet can be made to control the intake of salt, proteins, and calories.

There are two major forms of drug therapy used for lupus nephritis: corticosteroids to control inflammation, and cytotoxic or immunosuppressive drugs to suppress the activity of the immune system.

Corticosteroids

Corticosteroids have been used to manage lupus nephritis for nearly forty years. Still, there are many unanswered questions as to exactly how they work and how they may be most effectively used.

High doses of corticosteroids, or even corticosteroids given for extended periods of time, may cause a number of side effects (some side effects can be lessened by a low calorie and low salt diet):

- increased appetite
- fluid retention with weight gain
- puffy face
- easy bruising
- moodiness
- loss of mineral from the bones
- cataracts
- thinning hair
- an increased risk of infection and diabetes.

• High doses of corticosteroids (taken orally or intravenously) are given until the lupus nephritis improves.
• The dose of corticosteroids is then slowly reduced under close watch of a physician to make certain that the nephritis doesn't worsen.

Cytotoxic or immunosuppressive drugs are generally regarded as standard treatment for people with serious lupus nephritis. These drugs block the function of the immune system, which in turn prevents further damage to the kidneys.

The most commonly used is cyclophosphamide (Cytoxan).

Immunosuppressives that are used less frequently include: azathioprine (Imuran), chlorambucil (Leukeran), and cyclosporine (Sandimmune or Neoral).

DJ's battle

This is DJ

 

He is my youngest of three children. DJ will be seven this month. He is a happy go lucky kid. Pretty easy to please most of the time. But DJ has a problem. He is always runnin fevers and busting out with rashes and sores on his mouth and face and in his nose. Could it be?

I will post some images of his issue, as my rheumatologist feels strongly that he is facing a Lupus diagnosis just with the  pics I showed him.

Malar Rash

The red rash across his cheeks and bridge of his nose is a tell tale Lupus sign.

Malar Rash

Body Rash

Malar Rash and Mouth Sores

Malar Rash and Mouth Sores

Rash

Rash

 

Mouth Sores

 

DJ has gotten these sores since he was barely a year old. They've gotten so bad they've traveled into his mouth and down his chin. They are very painful for him and he always runs a temp with them. Here are some more severe pics of the sores...

 

 

He also gets sores in his nose that hurt so bad you can't touch his nose at all. He wont even hug you for fear you will touch his nose. Poor guy. My mother got these as a small child as did I. We both had/have autoimmune disease. So what do you think? He's about to be tested, so I guess we will see. It needs to be soon because juvenile lupus can be bad if untreated.

 

 

Symptoms (Pieces of the documented puzzle)

A

B

Severe Hand Swelling

Right eye involvement

 If you click on the image, you will notice that my right eyeball has lumps in it. It is filling with fluid as the right side of my face swells (even my nose is pushing to the left with the swelling) This stuff happens all the time. Never know when or where or why. Look at my forehead between my eyes...even that's swelling . This is painful when it occurrs and I've been told it's Urticaria and Angio Edema. In any case...even my doc is baffled on this one.