Sunday, 1 March 2009


Thanks again for all your loving comments and emails and calls. Mom called me yesterday, telling me to get my sister and brother from out of town here, they were going to operate as soon as possible. They got here, and still no surgery, so I asked the nurse when it was going to happen, and she said mom now has pneumonia, so they can't operate while she has that. My sister is with Mom today, letting me get a rest, because I am in pretty rough shape myself. If she passes away, I will be happy she is not suffering anymore, but it will be so very hard for me because my disability income is not enough to live on my own, and I will have to have estate sales to sell everything in the house, and then find someplace to move to that I can afford. (nearly impossible.) My lupus is getting worse day by day through this, and I can barely lift 10 kilos (20 pounds), and I'm getting slower each day when getting up and getting to the hospital, and resting more and more often on my walker with a seat as I go up there. It's a bit expensive to have Mom in the hospital for me too. I pay $5-10 a day parking, $4-$8 for 1 small item to eat for each meal at the hospital cafeteria, and quite a bit in gas. I'm happy to do it for her, but with my little income, it might run out soon. Well I'm going to try to have a nap since my sister is relieving me at the hospital. I have not been eating or drinking enough, and my doc said that could bring back the kidney stone attacks, so whenever my back starts to hurt again, I tense up and pray for it to go away and go get a drink. It's quite a walk to where a visitor can go get a drink of water or bottled water from where Mom's room is, and lately I have not had the strength to even make it that far to buy the drink of water. They advise us not to drink the hospital water from the tap, maybe it has something dangerous in it or something. The patients get filtered water, but Mom is not allowed to have anything by mouth, she is getting her fluids from IV (intravenous needles and tubes) and now they put another tube from her arm into her heart and pump IV foods (proteins and fats and vitamins) into that IV to strengthen her...so we are praying that with enough of those nutrients, her body will start to fight off the pneumonia. HOPE is so important. I think hope is the very thing that keeps us alive. If you lose hope, you lose reason for living. So hope is a catalyst for staying alive.
Continued prayers for my strength, my siblings strength, for softened hearts of my landlord and anyone else I may have to deal with through this ordeal, as well as my mother, are felt and appreciated. I need to approach the church and ask for volunteers to sit with her for a few hours a day to help her reach kleenex and scratch her nose or adjust pillows or answer her phone and hold it up to her ear, etc. They have pretty much forgotten us even though my parents worked almost full time for them for 50 years.

PEOPLE SAY STUPID THINGS WHEN THEY DON'T KNOW WHAT TO SAY. There is a lady from church who was assigned to come check on us once a month, but she is so very insensitive and doesn't understand pain or illness at all. Her husband has been suffering with kidney stones for months and she is quite mean to him about it all. She came to the door the other day and I told her Mom was in serious condition in the hospital, and she said "Well you and she are just barely existing anyway, not living, so maybe it would be better if the Lord took you both ASAP." I was so shocked and hurt I didn't even answer her. So I guess according to her, if we can't do all that she does, we have no right to be alive. I wonder what happens when she gets injured or in 10 years when she is in her 80s and can't do as much. I bet she will still think SHE has a right to stay alive. Needless to say, we will be requesting another lady to come to check on us instead of her. It feels awful that they have to ASSIGN someone to come visit us, but we have no way to go out and make friends, so that friends would check on us instead.
Well, I do remember that ALL THINGS (no matter how hard) work for good for those who love the Lord...I just don't feel like I have the strength, money and manpower or local friends I might need to get through all of this and do the funeral and move and then travel to another city to go to court to get my husband here for our hardship.
Just tired out me.


Sending you LOTS AND LOTS of hugs...!
And you are in my thoughts and prayers...through everything.

Sounds like you are thinking straight and covering all bases--
things will work out...love you!

Hello! I just read the comment you had left and wanted to get back to you.

I think it is funny how doctors tell you how you are supposed to feel. My PCP said the same thing, that I should not feel any pain. However, my nephrologist believes that any pain could be a sign of worsening conditions. I am in pain, I hurt constantly. I guess that part of life with lupus is learning to deal with it? I would say that 9 times out of 10 I will disregard the pain, take meds and go on. What more can we do?
I am so sorry that your life is in such a whirlwind of stress for you. I cannot believe what the woman said to you, that sickens me. It's too bad that others will never quite understand. It is difficult to live with lupus and raise my daughters. I do not tell them much about what is going on with my health, I want them to grow up feeling normal and not pitying their mom for being sick. It's so hard to stay motivated.

Also, like my doctor told me once, it's no wonder you are depressed, "look at what you are going through, even some of the strongest willed people out there could not withstand the pressures that you are dealing with". Understanding from my doctor. It helps me to realize that it is perfectly normal to be depressed, just remember that God does not give us anything we cannot handle. That is why we have lupus, because we are strong enough to live with it.

Hi Sheila :)

I hope and pray your mum's operation is done fast and she recovers to live a long healthy life.

I am shocked to read about that thoughtless and unkind lady who made such stupid remarks. She will have to face a severe retribution for this uncharitable remarks.

Please be assured that everything will go well. There is always light at the end of the tunnel. Sometimes the tunnel is short and sometimes it is long and appears to be never ending. Please keep your spirits high, be brave and courageous. Everything will come out all right in the end.

You and your family are in my daily prayers.

Post a Comment

Newer Post Older Post Home