Good morning everyone. I have been a bit busy these last two months my mom has IPF Idiopathic Pulminary Fibrosis which is a terrible lung disease and there is no cure for it all we can do is manage it. In early November she got a terrible cold that turned into pneumonia and had to be hospitalized in ICU. We had one night where we thought for sure she was gonna die but pulled through. After five day in the hospital she was released and sent home on hospice care and with hospice someone needs to be in the house 24/7 and seeing how I'm the only one in the family not working or with small children at home I became the one to stay. My one sister who lives in San Jose Ca was planning on moving into moms house to help out, two days before leaving her car got stolen. "what luck" anyway life goes on. There was another time a couple of weeks ago we thought she was gonna go again and again she pulled through which I am very glad. Needless to say this has taken a hugh toll on me. I do have a caregiver that comes in mon-fri from 8-4pm but I cant go home during that time because I live an hour and a half away so it makes no sence to go home just to turn around and drive right back. Here are a few things that I have learned by this all. I do love my mom very much 1. I HAVE to loose weight, I weigh 190 and I'm 5'9 althought this is not too bad but when someone has to change you or lift you it is NOT easy. My mom weights 190 and wow it is very difficult to change and lift her as her legs are very weak and can only stand for like 5 seconds. But what I take away from this is that I in no way in He double hockey sticks do I want to put my daughters through this if and when I get to a point in my own disease. Now my husband thats a different story I will allow him to care for me only up to a certain point and then I just want to end it all. If I cant feed myself, wipe myself,dress myself, and so on, I dont want to put my family through this. But what has made this even harder on me is that I am taking care of her at her house not my house so I have a plan that after the holidays if my sister has not made it down here I will move my mother to my house where I can care for her with a bit more help because I have two sisters that live about 10 minutes from me and my daughter lives like 5 minutes away. And I will still be able to have a care taker for 8 hours a day. Don't get me wrong I told my mom a long time ago that I would never put her in a convelesent home and that I would take care of her so I am honoring that promise. She has always said she wants to die at home and so I'm here, but when I suggested moving her to my house I asked her about that very question and her reply was well if I'm at your house then that is my home... 2. I need to get my end of life papers in order. ie Will or living trust with my final wishes, DNR papers, 3. I need to take time for me, my mind body and soul. Gosh where do I start. 4. Make time for your most valuable friends. One of my very dear friends was in the hospital for a week and almost died and I didnt even know. She called me after getting home to see how my mom was during. Well thats all for this time. I will be back again. I hope you all have a fantasitc day and Merry Christmas and Happy New Year to all.

Where has the time gone?

It has been over two years since I have posted anything on my blog. I have been very busy i guess. My mother had taken ill and I have had to spend alot of time with her and I have four grandbabies. Two of which will turn 2 this year and another one will turn 1 this year and the last one id going on three months. I want to get back to work on my blog and I will just have to make the time to write. There have been so many changes that have gone on the last two years. And i know i only have a few followers right now but i am hoping that will grow in the future as i begin to write about my experiences and other stuff i have learned about Lupus and other autoimmune diseases.

Maybe I don't need it anymore!!!

Here's a funny little story. I have been waiting on a referal authorization for an Infusion of Rutuxan from my primary doctor. It has been a couple of months. Well yesterday they called to schedule an appointment because it has finally been apporoved. She wanted me to come next week I told the lady that I had commentments on Tuesday and Wednesday with my stepdad as he is having eye surgery and that Thursday I had a follow up appointment with my Rheumatoligist but I am available on Friday, I did tell her that I would be happy to cancel my follow up appointment and come in on thursday if she needed me to. Her answer was no keep your follow up appointment because maybe I don't need it anymore??? I got alittle upset and told her NO I do need it and I have been waiting months for this to be approved. Like all of a sudden I got healded and I don't need it anymore. I told her I see him every month like clock work. I have been battling this vasculitis for over a year and a half now and the drugs I'm taking just aren't getting the job done. Well that's one for the record books.

More information on Sjogren's Syndrome

Henrik Sjogren was a Swedish ophthalmologist and the first to recongnize that dry eyes and dry mouth were often found in people with connective tissue diseases. At any given time,the combination of problems encountered by the patient may vary considerably, from no active blood features of one ,two, or all three of these conditions at the same time. These persons often (but not always) have one specific blood antibody in their blood (anti-U1RNP antibody) but not the other antibodies associated with SLE, SSc, or PM-DM. Whether this is an entirely separate disease, or a situation in which one person has three diseases,remains uncertain. However, the presence of a single individualized and directed at the particular problems present at any given time. Sjogren's Syndrome also occurs in some people with lupus. They have an increased frequency of sun-sensitive rashes and Sjogren's related blood antibodies (anti-SSA and anti-SSB antibodies). Women with anti-SSA antibodies are at increased risk of having babies with "neonatal lupus" Symptoms in the infant can be as minor as a temporary lupus-like skin rash, or as serious as permanent damage to the electrical system of the heart which results in a very slow heart rate (complete heart block).

Lupus awareness month

May is Lupus Awareness Month. Show your support for the cause. If you know someone who has Lupus reach out to them and just let them know how important they are. You can also show your support by ordering items from www.cure4lupus.org they have many items to show that you are a supporter. Or wear purple to show your support.

What are the risks for Developing Lupus

Sex: More than 90 percent of people with lupus are women.

Age:Symptoms and diagnosis occur most often when women are in their childbearing years. between the ages of 15 and 44. Symptoms of lupus will occur before the age 18 in 15 percent of the people who are later diagnosed with the disease.

Race: In the Unites States, lupus is more common in people of color-African Americans, Hispanics/Latinos, Asian American, native Americans, Native Hawaiians and Pacific Islanders-than in the Caucasian population. It also appears that lupus develops at an earlier age and is more severe among members of the ethnic groups.

Family History: Relatives of people with lupus have an approximately 5-13 percent chance of developing lupus. However, only about 5 percent of children will develops lupus if their mother has lupus.

Learning about Sjogren's Syndrome

Sjogren's syndrome (pronounced show-grins).
While there is no cure for Sjogren's syndrome there are treatments that your healthcare provider can prescribe to help relieve the symptoms that are a part of this disease, and potentially help prevent some of it's complications. Sjogren's syndrome is an autoimmune disease, whereby your body attacks its own exocrine glands.These glands are your moisture-producing glands. Typically, with Sjogren's syndrome,the salivary glands and lacrimal glands are primarily affected. These are the glands that produce saliva and tears. Most likely, you are experiencing dryness symptoms of the mouth and eyes. Certain areas of your body may not be receiving moisture from other exocrine glands. These areas include the nose, skin, vagina, as well as the respiratory tract (lungs) and gastrointestinal tract (stomach and intestines). I have found that for my dry eyes I use a moisture eye drop. And for me I like to use Refresh tears. Moisture drops for dry eyes. And for my mouth I use a product called Oasis Moisturizing mouth spray. I had been given Restasis in the past but I could not get past the burning in my eyes. I have had this disease for many years so I have tried many different products, so you may want to try out different ones too and find the ones that works best for you. If you have a problem with dry mouth and dry burning scratchy eyes you may want to ask your doctor to check you for Sjogren's syndrome.