Wednesday, 21 December 2011

Struggles, But Protected by Angels

I’m struggling, but also I have felt like I was surrounded by angels' protection twice in 4 days. Went unconscious for 24 hours, then 2 days later, had blood sugar so high it usually stops a person’s heart, so passed out again before I could call 911. Mom is pretty much bedridden with bleeding and peeling and terribly painful feet, no Dr. knows the answer, so I’m trying to do more for her, when I can't do much at all. We have prayed and found a few helpful items, but no cure. I have had 4 organs go into partial failure, adding to 3 others that have been bad for many years. I am on medicines for 3 of those organs. One organ is my pancreas, so last week I was put on insulin. I had to take 9 pokes a day, (5 injections and 4 tests daily) then I got allergic to one of the insulins, so I had to add 3 allergy injections a day. Then I found out I was allergic to the allergy shot too, which made me go unconscious, so when I woke up the next day I told the Dr. I wouldn’t take that again. She said my life is in danger without that insulin, but it’s in worse danger with the allergies, so she’s concerned. Today I’m still having chest pain from the dangerously high blood sugar yesterday, but this too shall pass. It feels like I will stay alive no matter how many things go wrong with me, so I will just be expected to keep movng even with many organs failing. Eagerly awaiting the Lord's coming.

Before last week, I was very hopeful, because one of the medicines for one of the organs started making me think so much clearer and brought back my memory and I thought I had a new chance at life. But as always, whenever one thing gets corrected, lupus has to cause 3 other problems to prevent any advancement toward health. It’s discouraging, but I have the Lord, and He is my comfort and my strength.

I wish everyone could feel the peace and comfort I feel, even through pain and severe weakness.

Bless you all,

Monday, 11 July 2011


Chameleons are so amazing. If you go to youtube and look at videos of them, they can hide in front of things that have many colors, even patterned fabric. They have been created with natural ability to adapt to every circumstance. The camoflage is for their protection.

Humans seem to have been able to adapt to so many changes of climate and lifestyle and disaster and change in income, change in family size when new babies come. It seems that one of the few things a body never adapts to, or get used to, is pain. I have had worsening pain since age 15. If a person lives that long with almost any other situation, they would adapt to that. Why do our bodies never adjust to pain? There are so many other health problems that come with long-term pain, which create more things to adjust to, while becoming more physically weakened, with less ability to be strong enough to adjust.

I have studies natural remedies for all my conditions, but now I need to study natural remedies for Multiple Sclerosis.

My mind and body is changing so fast, it's frightening. Things that used to take me 1 hour to write or do, now take 3 hours, and I don't have the strength to do much of anything. 10 constant symptoms at once while trying to do everything for Mom makes me spend progressively more time doubled up in pain every day. Like I said in post below, that has benefits for Mom, but I am not adjusting to this!

If any of you can find any uplifting thoughts or scriptures about adapting to unbearable circumstances, I would appreciate reading them so very much.


Tuesday, 5 July 2011

A Benefit from Frustrations

Hello my friends. About 2 days ago, I noticed that during the number of hours that I can't move or think or talk, my Mom gets up more, and gets her own ice and drinks. My periods of uselessness help her to slowly increase her strength, and since my down hours are progressively increasing, her strength is also progressively increasing

It frustrates me that with my fibrofog, and forgetting due to trigeminal neuralgia attacks, that I have to keep reminding myself of the encouragement from the scriptures. I should remember these things! I guess that's why the Lord sent me such wise and patient
friends to remind me. Thank you all.


Friday, 1 July 2011


Today would also be Princess Diana's 50th birthday. There is a very nice article and pictures commemorating her life @ http://bit.ly/lb9EES. Some people have said I looked like her sister as a teenager. Pic on left is me @ age 16.

Susie D. I'm not sure if you know how blogs work yet, but if you click on "3 comments" under the Wheelchair fiasco story, you will see where I replied to you. I will also reply to your kind words @ http://www.lifewithlupus.org/ . (Yes that WAS a plug for anyone with lupus. Great support group.) There needs to be a support group for people with multiple illnesses, because when we are suffering but don't know which disease is causing the problem, we just avoid them all. Some of what I wrote to you will be used in this update.

I kind of shocked myself to see that I have not posted for a week, when so much has happened each day. Since Mom came home, (June 20) I have been so rushed off my feet, or else crashing in pain, so I have not had the concentration or strength to think of what to say here. Today I am stuck in bed pretty much, except for a couple of crises that came up and needed my help, and doing laundry. Even on days I can barely move, urgent things happen or need doing.

The nurse came for her half hour this week. She will come again on Tuesday, as will the high school girl I hired for some housework and errands. So I am thankful for what little time they can spare, until my housekeeper finds a full time job, then we will go back to searching for an honest lady, which has taken up to 5 years at a time. I LOVE HELPING PEOPLE and that includes my mom, whom I respect and love dearly, but how i wish I felt better so I could do a better job.

I feel very weak because I complain a lot, which is a type of a cry for prayers and support, because I feel so alone physically in all this. I know I am being carried some, because if I used only my own strength, I'd be bedridden. I'm one step up from that, kind of like a zombie. lol. I complain because I don't handle all of this well at all. So many say I'm so strong, but I just see the things I am not getting done. Last night needed to go to the hospital again for pain and heart trouble. I am pushing myself past my limits every hour, then by 4 PM I a crash, not able to move or get either of us something to eat or drink. I take some meds and then by 9 or 10 I can help with a drink or soft food for Mom, and something light for myself. I just roll in pain when I crash, and I pray continually all day. It just feels like Satan trying to counteract everyone's prayers by creating another crisis every hour. Things that never happened before are hitting us all at once. Adds greatly to the hardship.

I AM thankful for all my blessings, but without strength to meet your needs each hour, all the luxury on earth is worthless. About every 3rd or 4th day I spend the day in a semi-conscious state. (part of lupus and diabetes). I told the Dr. my whole new set of symptoms, and he checked my records and said "Well, looks like you are having your first flare-up of Multiple Sclerosis." Oh great. As if I need that on top of everything else. It made me realize why so many local people, even church people, don't want to be our friends. I can see them saying "It's impossible for one person to have that many diseases!" I can hardly believe it myself, and I live with them, so how could others believe it? Did you know Job, in the Bible, only suffered for 5 months? That seems to barely compare to people who suffer for 50 years or more. I was hoping all this extra physical activity would help me lose weight and make me healthier, but I gained water/fluid weight due to heart failure/damage, and I'm getting worse every day, not more healthy. One good thing about this is that I don't even have the strength to worry about tomorrow, because I'm just concentrating on what needs to be done in the next hour, then just collapse instead of relax. Wow, I have spent almost 12 hours writing this in between keeping busy and crashing.

Thanks all for being patient with me. I think if I had even one local friend or a spouse to talk and help, maybe I wouldn't seek prayers and support so much online.

Bless you all,


P.S. Please pray for a friend (Pia Go-Alano) and her father. They flew to China for her father's cancer treatment, because this one hospital has such a

high success rate. You can read her daily updates @ www.piasjournal.com .

Is anyone else on blogspot having trouble with spacing? I have now tried 5 times to move all the paragraphs closer to each other and save them that way, but when I "view blog", they are always far apart from each other again.

Thursday, 23 June 2011


Today I have to lift a wheelchair in and out of the car 6 times and push Mom around, when I have had to use a walker with a seat for many years. I have been shaking with weakness most days this month. I'm sure praying to get through that. One minute at a time I guess. I just dread passing out when I'm out in public, because then I'll be in the hospital and Mom will be left helpless. The Dr. raised my pain medicine to 3x normal + some other pain meds in between the regular dosage, so my lupus is the worst it has ever been since my Dad died. I need to forget my medical care and just help Mom, it seems.

This will be Mom's first time using a wheelchair ever. She should have been crippled twice. She had polio, but was cured, then both legs were run over by a heavy gravel truck, which just crushed them, but again she was healed, miraculously. Crush injuries just do not heal like that naturally. That healing kept her on her feet almost until age 80, and she might get strong enough to get out of a wheelchair soon, if I can get her to eat to regain her strength! I sure needed the housekeeper for this today.Well here I go to pretend I'm superwoman! lol.

Blessings, Sheila

Thanks so much for your continued prayers my wonderful friends.

Tag created by Monique

Things are a bit tough here. Mom and I are both getting weaker, because Mom won't eat or drink more than a mouse eats. She can't regain her strength without eating. Also we found out the nurse comes 1/2 hour a WEEK and the housekeeper comes 2 hours a WEEK until she gets a summer job, then none at all. Time to go check Mom again. I don't even have time to find pictures for these posts lately. Will add some when I can. Now just making dozens of lists of different things Mom needs. Meds, care, foods, appointments every day for something or other, things to ask the Dr. for, things to have the housekeeper do, etc. Many things she needed done by now have not been done. I have not been able to keep up with it all. I'm so scared Mom will die due to my lack of perfect care. If the Lord takes her, so be it, but I don't want it to be caused by medical negligence or something I did or could not do.
Peace and prayers to you all,

Monday, 20 June 2011


Hallelujah! One of the church leaders I called found me a very honest, reliable young lady who wants to be my housekeeper!! I know I'll have to teach her everything, but it's always been that way with housekeepers and I. Even if it's at the last moment, the Lord often does meet our needs. I am so grateful. I wish she could come help me today to get Mom home but she is writing her exams for school.

Sunday, 19 June 2011

Trials Are Growing Pains

Many people today have said they could not log into blogger. I'm having lots of troubles doing blogging too, so I am sending these by email, hoping they will show up. I can't add pictures to the posts until I can log in.
Just when all seems to be going right, challenges often come in multiple doses simultaneously. When those trials are not consequences of your disobedience, they are evidence that the Lord feels you are prepared to grow more
11 My son, despise not the chastening of the LORD; neither be weary of his correction: 12 For whom the LORD loveth he correcteth; even as a father the son in whom he delighteth.  (Proverbs 3:11–12).
He therefore gives you experiences that stimulate growth, understanding, and compassion, which polish you for your everlasting  benefit. To get you from where you are to where He wants you to be requires a lot of stretching, and that generally entails discomfort and pain. … God loves you perfectly. They would not require you to experience a moment more of difficulty than is absolutely needed for your personal benefit or for that of those you love.    
                      -Richard G. Scott
 I wish there was a way I could be completely positive right now and now scare you all away, but my body and spirit are just screaming out for help. It seems like because so many people are praying for me, Satan is trying to attack me to counteract any help I might feel. I do know my loving Savior is strengthening me, but right now it does not seem like even that amount of strength will be enough when Mom gets home and needs special care, when I am in such bad physical condition myself. Besides picking  Mom up, going from my car to her room 4 or 6 times to take her belongings out, then hauling it all into the house, and trying to get her out of hospital then into car, then get training from a special care nurse, tonight my brother from out of town called and said he is coming tomorrow. I have only seen him about 6 times in my whole adult life, so how am I going to entertain him and care for him after all that in 1 day? I am usually in tears by the time I get home from the hospital, so I will barely be able to move tomorrow. Thank goodness he said would not stay overnight this time, it will just be a few hours visit, so I don't have to set up a bed for him or get up early and make breakfast for him. I do want to see him, just wish he could have chosen a different day.
Even if these trials are meant to make us stronger, I don't feel like I have the strength for the changed life that we will have. Feels like I could die any time. Most often, the caretakers die before the patients do, because they get so exhausted and sick and can't take time to recover or even gain strength. The few Church members that came out to visit during the first week seem  to have gone back into hiding. Most church groups get impatient with people who don't heal in 1-3 weeks. I hope I can be only positive soon.
Tomorrow the hard work starts. I won't have to go to the hospital, but I will be on call 24 hours. I need a miracle.
Love you all, Sheila 

Friday, 17 June 2011


Today I am rolling in pain. I almost went to the E.R. but realized I couldn't if I needed to be strong tomorrow to bring Mom home. Also my brain is not working. Painfog, brainfog, fibrofog, choose a phrase.

They are now going to keep Mom until Monday, which will give me a bit more time to rest and get things ready here. I couldn't get to the hospital today, and Mom saod she really needed something. I told her I'd get it to her. I knew I'd be crying all through the hospital, this pain is too much to even move. My brother, who was very busy with his own really rotten day, rescued me and took the item up to her. It was something she really did not need. That frustrated us. I have no idea how I can be her nurse and servant when I can't even serve my own needs.

It seems every small task that my brother and I attempted during these 3 weeks turns into a disaster, taking many times longer to do. I HAVE LOST MY WALLET! I don't even have the strength to think of all the cards that I have to report lost, then call and report them all, and then go to each place to get a replacement card. I can't even get a replacement for them until Canada Post strike is over, because they must be mailed to each place so I can go pick them up. I'm just crying and begging God for renewal and strength. I even cast Satan out yesterday, then I got worse. What a mess I am today.

She Comes Home Tomorrow

Mom will be released tomorrow. I'm glad I won't have to go there everyday, but from what the surgeon told me, it will be more work to have her home, so I guess I will be staying upstairs on the couch because I can't take the stairs 20 times a day. The surgeon told us all the details of what would happen if she lives or if she died in surgery. Both options described a very difficult life. I have not found a housekeeper yet. Decided to not go through that agency that wants $50 a day. I'll try to find an honest lady who doesn't charge that much. Today my pain is really bad. Too bad to get to the hospital. Hope God gives me the strength tomorrow. That will take 3 or 4 trips from the parking lot up to her room and back down to the car again, then trying to help her get from car up to her room in the house, and then the work starts. LGMS and courage again. Lord, thank you for giving me compassionate friends.
Blessings, Sheila

Thursday, 16 June 2011


I remember a few years ago, a TV evangelist mentioned that his most common phrase he whispered under his breath is LGMS! LGMS! His son heard him and asked what is LGMS? The preacher said "Lord Give Me Strength!" So that has been my mantra today, but also LGMP- Lord Give Me Patience. It's always something, when it rains it pours.

Today a Dr. that Mom doesn't even know, has never seen, has no connection with, stopped her nausea medicine. She has had constant nausea for years due to gastroparesis (paralyzed stomach). It is almost as if he picked up the wrong chart, instead of his own patient's chart, and stopped the nausea medicine. So she was really suffering. It took me going through some very tough rude nurses, and I was asking as kindly as possible "Do you happen to know why some Dr. stopped Mom's nausea medicine? She even has it while at home, but it's worse since the surgery." I got told off good, like I had no right to advocate for my Mom, only she could ask that. So SHE asked the nurse, she got upset about that too. So I went out and found Mom's other nurse and said "Help, I need someone who will advocate for my Mom. Some Dr. has stopped Mom's nausea medicine. She even takes it at home, and her nausea is worse in here." The nurse was very kind and said she would find out what happened and would get her some nausea medicine somehow, ASAP. I thanked her so much.

In the USA we had "patient advocates" right in the hospital, that you could call on your phone, and they would come and help you negotiate with the staff over whatever problem is happening. We don't have that here in Canada.

The tests that Mom had before the hospital lost her showed some bad results, but they will not tell her what they found, like they usually do here. They are just giving her more tests, and I guess they will tell us when they know for sure what they are dealing with.

I know the Lord is carrying me, because this fatigue I feel is like "dead woman walking" type fatigue. Every small task I try to do gets messed up or I hurt myself or something goes wrong, which takes about 5x more of my strength. I got so mad I even cast out Satan from our lives and home today. So I hope that will help.

I have 13 pounds of water on me, which could be around my heart and lungs and that's what is making me inhumanly weak. Heart failure does make a person retain water. (Edema). Lupus makes water accumulate around the heart, making it harder to beat.

We talked to the home care team today. Mom was supposed to get a nurse when she goes home to help with the medical needs. We were told a nurse might come by weekly just to take her vitals. There are at least 5 medical procedures she will need each day, so I guess I'm on my own again unless I can change their minds tomorrow. The household help we need will come out of my own pocket, $25 an hour with a 2 hour minimum. I guess it will have to go on my credit card because I truly can barely move. Hopefully I'll find a person who charges less ASAP.

zzzzzzz falling asleep. Cya soon.


Wednesday, 15 June 2011


To see today's update, scroll down to the post after this one. This is for those interested in what hospital policies were changed.

Here are the frightening new hospital policies my Dr. told me about. I know it is in B.C. and Alberta, not sure how if this is a federal policy or not. The surgeon had no idea about them, so I guess it's quite new. It seems like a bad science fiction script from a cruel civilization. Even third world countries don't do this. Even prisoners get better medical care than these new policies!!

1) You need to have a witness or advocate (visitor or family or friend) with you at all times while in the hospital, or you will be ignored. There are not enough nurses. If someone is there with you, the nurses will show up so the "witness" won't complain about neglect. Those who are alone get sicker from neglect. When you can't be there after visiting hours, which is 16 hours a day, you don't know if your loved one is getting what they need.
Most other countries supply a place for a family member to stay with the loved one in the same room. In this hospital, there is a small space for ONE chair. It's ridiculously tight. I wanted to stay all night, Mom is in a private room. She asked me to stay, so I wasn't bothering her. I was in the chair, and quiet, so I wasn't bothering nurses or other patients, but I couldn't talk them into it.

2) Your family Dr. (General Practitioner or specialist) can't be your Dr. in the hospital. If you go to the Dr. and he says "YOU need to be in the hospital" he can't arrange it. He has to send you to the E.R. and if the E.R. Dr. is in a hurry, and he doesn't know your history, he will NOT talk to your family Dr. He will make his own decisions, and if he thinks you don't need the hospital, you go home to get worse. You can't even get a home nurse unless that hospital Dr. says so. Hospital doctors are called "hospitalists, (as in "hospital specialists.") If you are admitted, you get assigned to a hospitalist. My Dr. said that a hospitalist has NEVER consulted with her on a patient's history, medications, or why she thought the patient needed admitting.

3) Then the next part is that if the Dr. puts you in the hospital, he can only treat you for the problem that sent you to the E.R. So if that problem is dehydration, there's a high chance that he will not give you ANY of the other medicines that you have been on for years, like heart medicine, stomach meds, anti-depressants, etc. Going without those meds can be dangerous, even deadly. That Dr. decides what you get or don't get and won't even talk to your family Dr. There is no continuity of care this way. While you are in the hospital being treated for one thing, you are developing other conditions from missing your other medications.

Another example of neglect:
In 2007, my heart specialist Dr. decided I needed a pacemaker. He submitted papers to get it approved, and the night before my Dr. appt., his nurse called me from home. She said that her calling me was against the rules, but that she had just been so shocked and upset about the letter that came in reply to my request for a pacemaker, that she was quitting anyway. She said that when I come in the next day, the Dr. will give me about 3 minutes time and tell me that I can't get a pacemaker, or maybe he will say he was mistaken and I don't need a pacemaker. The nurse said that the letter said "In order to keep the medical system afloat, it is often necessary to decline expensive treatments to those who are not contributing members of society." I'm on disability, but I am a contributing member of the WORLD'S society in other ways. I went to the appointment the next day, and he was eager to get me out, as the nurse said. He told me that he was mistaken, that I don't need a pacemaker. I said, "How can that be? You sat with me and showed me every test, and explained why the tests clearly showed I need a pacemaker. What changed?" He said, "You just don't need a pacemaker." I said, "So how was I miraculously cured of heart failure in 1 week?" He left the office saying "There's nothing more I can do for you." It was just as the nurse predicted.

The previous night, the nurse on the phone was crying, saying that now she understands why patients were allowed to die when there was an easy remedy. I have talked to about 5 people since then who believe their relatives were neglected or getting worse under the direction of the Dr., with the plan of accelerating their death, because they were too expensive for the system. I talked to my 80 year old Aunt who was a nurse. She said that type of thing has always gone on, like starving a very deformed newborn to death so it won't be a drain on the system all its life. When they saw someone very ill who had no visitors, they decided he had no support system in this life, so they also neglect those people so they won't be a drain on the system. So maybe this has always gone on, but now much more often and its not a secret anymore, it is written into the policies.
I'm sure Doctors are so frustrated, being told from above that they can't offer this or that treatment that a patient needs.
Since my Mom got supplemental insurance, she has been treated much better, so it seems more than coincidence that she was neglected so much before, but now that gov't health care isn't paying the bill, she is getting amazing help and attention. All Canadians can get this very cheap supplemental insurance, which has benefits on it that I have never seen on any insurance plan that I had while living in the states. go to
www.GMS.ca .
It truly seems as if the gov't goal is to cut costs, save money; to get rid of the sickest who are costing the gov't the most money.
Americans are afraid this type of medical care will happen with Obama care. I don't think it will happen. Obama made those laws to take effect in 2013, because he probably won't be president then, so he won't have to deal with it. The new president will have to, but he might just scrap the whole idea. If Obamacare would copy the best medical systems in the world, such as France and Denmark, it would be much better than copying Canada, UK and Australia.
Love from very tired Sheila


I'm SO frustrated! Every time I leave Mom, something stupid/negligent happens. I can't stay with her 24/7. I'm so sick now that I saw her for 1 hour after 2 days away. This time, even if I had been there, I could not have gone with her to this test, where the incident happened. They took Mom for heart tests and ultrasound, then instead of taking her back to her room, the put her out in the hall. At 4:00, all that section of the hospital closes down. No one was around. Mom thinks she was there for about 3 hours. Finally a drunk lady came by, probably not knowing where she was going, but I'm thankful that God sent her. Mom yelled out "Hey, can you help me?" The lady came over and Mom said "Can you please go find someone that works at the hospital? I've been laying here for hours." The lady said she'd be right back. Mom was worried again because drunk people have a short attention span, and she might forget about Mom. Mom had now been without her meds for 4 hours, and really suffering. Someone from the hospital came back and she explained what room she is in and how she got abandoned. The staff member took her back to her room, and the head nurse comes in and swears at Mom, saying "Where the hell were you? We even took your name off the computer, thinking you had gone home on your own!" Mom said "I was lost! How could I go home with a PIC line (central IV line that goes directly into the heart" and a number of IVs, and not even ability to sit or walk for very long?" So the head nurse said that she had to move Mom to another room, because she already moved her belongings out of her room! They got her back into the system. My brother was sitting waiting or hours by her bed. Didn't anyone see a visitor and an empty bed and wonder if something was not right? They must have moved her stuff out of the room before my brother visited. Mom explained that she needed her own linen, because she's allergic to the polyester hospital sheets. The head nurse said "YOU ARE A LIAR!" Mom said "look in my records. It says so there, and it says so on the white board at the head of my bed. Then she brought some oral medicine for Mom and went to the tap to get her some water. Mom said "I have bottled water, because I'm allergic to the chlorine in tap water." Again that head nurse said "YOU are SUCH a liar!!" Have you ever noticed that people who lie a lot assume everyone else is lying, but those who don't think about lying, are pretty trusting of others, up to a certain point.

I still feel the Lord comforting me and strengthening me. I feel like my brother and I are being attacked by the evil one hourly. Its just too much to be coincidence to see so many things go wrong each hour with every small task we try. But I know the Lord is stronger than Satan. My brother doesn't know the Lord, and he is such a terrible emotional state. He has heard my parents speak of the Lord every day, never forgetting to make a life learning lesson from the small things in life, but he has never been able to be spiritual. When I see his torment and suicidal tendencies, I imagine I would be in his same condition without knowing my Savior. I do keep praying for him and sharing the gospel with him and trying to comfort him.

Then they got her into the new room, and physiotherapy lady came by to take her for a short walk. She explained that she had just had the most difficult afternoon, and was lost for hours, and got no meds, and there was no way she could get up and walk right then." The physiotherapist was nice enough about it. When she gets out, I will be sending a report of all this craziness to the administration. That head nurse was doing a lot of things to just be spiteful to Mom last night, and we don't want her to be worse to Mom, so we won't report it now.

Good news is that she is down to 3 IV drips and one tube coming out of her body, and is on oral meds for some of the IV meds. The only thing we fear now, is that if her bowel is not working and not digesting, the oral pills won't digest and won't work, then she'll be in terrible pain.

I'm struggling. Lupus has decided to attack my central nervous system, causing the exact symptoms of M.S. (http://tinyurl.com/3lc83fx) Adding that to my other illnesses really makes me amazed how many things can be wrong with a body, but they still live on. Still recovering from that heart attack 3 weeks ago too. I need help really badly. Looking for someone honest and compassionate who won't charge $25 an hour.

My brother is so very frustrated, he is suicidal. I talk to him, but told him that maybe the suicide hot line would know better what to say. He said he called them once, they won't talk to you unless you give your name and address before you start talking, like they are coming to get you and put you in the mental ward or something. So he didn't call them again. It has really made me wonder if all 3 of us will leave this earth within a short time.

I am getting such wonderful emails and love and support from so many of you, and I thank you so much! There are so many more frustrating, heartbreaking things going on that I don't even want to discuss here, but friends like you are like angels, who help you fly when your wings are broken. I don't have much, so my friends are my most precious possession.

(Personal note to self, cuz I forget so much. Beryl, Burl)



Tuesday, 14 June 2011

Tuesday June 14 Night

Mom has more than one Dr. and the second Dr. said she won't be home this week, so I'm praying she'll be protected from these super-infections that the other Dr. is afraid of.

I'm home struggling again today. Couldn't get to the hospital no matter how I tried.

The Dr. shocked us by saying that Mom will probably come home in a few days. That's good news, but its not enough time to get the medical equipment rented that she needs, or hire the help we will need. First he said she would be in the hospital for 4 to 8 weeks! Then he said that the IV he wants her on for 2 months can be given at home. Earlier, he said there is a new, dangerous medicine that he wants to try her on, and wants her in the hospital in case she has some bad reaction. I guess we will be dealing with any frightening reaction on our own. She's really not ready to go home. Mom can not even walk yet. She can only sit up for 5 minutes without terrible pain. They want her out of the hospital because there are so many super-infections there that could kill her.

So I am calling the nursing agencies to hire a nurse and also to hire someone to help make simple meals, clean, and run errands. The nurse can only come for half an hour in the morning and half an hour in the evening, so I will be her full time nurse while I'm on oxygen and using a walker.

I'm again so frustrated with people who say "If you need anything, just call me.", then I ask the smallest little thing and they say they won't. They shouldn't say it if they don't mean it.

I am so exhausted that it's scary. I come in the door, go downstairs and put my oxygen on and just fall asleep for a couple of hours before I can even change into my night clothes. Some nights I don't change at all. I just sleep in my day clothes. I am passing out after every 2nd sentence as I write this. Dang! Our life is like a nightmare coming true. Both of us getting sicker and sicker and not able to take care of ourselves or each other, but because I'm younger, I am expected to do so many things that are making me sicker every day!

The Dr. is only interested in getting her healed from her surgery, he won't look at any of the problems that sent her to the hospital in the first place. I have to take her to her own Dr. for that, and I will be lifting a wheelchair in and out if the trunk and pushing her in a wheelchair through a very long mall to do that.

Staying at the hospital up to 15 hours a day, then coming home to just collapse has been very hard, so on the weekend, and today (Tuesday) my body just crashed. I was a passing out all day and I could barely stand or walk due to pain.

I have been very clumsy and forgetting the most simple things, can't think of the right words when I talk.

I just took a break from writing this and called my Dr. she says she thinks my lupus is affecting my central nervous system. When it does that, it acts a lot like M.S. (multiple sclerosis). She listed the exact symptoms I'm having. Then add lupus symptoms and the intense pain of TN, (trigeminal neuralgia http://tinyurl.com/TNwiki) and Mom and I are in rough shape to help each other.

Wow, it took 5 hours to write this. That's crazy! So tired.

Going to call Mom then crash. Thank you all for caring. Don't know what I'd do without my internet friends.

Blessings, Sheila

Sunday, 12 June 2011

BAD CRASH, But a miracle too.

It takes a storm to bring a rainbow!!

Hello friends! Thanks for your compassion. I absolutely crashed this weekend, no voice, nearly impossible to walk, spending much of the time semi-conscious, which happens quite often, but I was freed from that for over 2 weeks, in spite of more heart damage due to not taking care of myself after that heart attack 2-1/2 weeks ago.

I think I've also had a miracle. NO TN (trigeminal neuralgia) PAIN! That has been constant since Feb 1. (see www.tinyurl.com/TNwiki) There's no way I could be there for Mom while fighting lupus, the heart attack I had 2-1/2 weeks ago AND TN. I also got my first grand-daughter this week!! I'm so amazed at how much she looks like my own newborn pictures.

We have had to do so much talking about funeral preparations and things to be done after she passes, that I'm exhausted emotionally and physically.

Now that Mom is a bit stronger, I will only go see her for 2-3 hours twice a day, if I'm even able to do that much. Was staying 8-15 hours. The nurses are very good to her, so I don't have to worry about her care anymore. I just have to try to protect her from these random weekend doctors that plan to send her home in 3 days, not knowing all the plans her usual doctor has for her, and not knowing that we need to talk to to the transition team, who will send a nurse to the house for a while. They need to at least keep her until she can walk to the bathroom, and until the give her something to eat and see if her bowel can handle it or not. If not, she'll be on Ensure for the rest of her life. There are other things her Dr. wanted to do, so I will be calling him immediately if some idiot Dr. sends her home too soon, because at this point, she and I will both die if I have to be her nurse 24/7. Oh well, one hour at a time. I love all of you for your compassion.

God bless you!

Saturday, 11 June 2011



Mom and I are both struggling today with pain and weakness and heart problems due to the strange weather. So sorry she has to deal with lupus pain and the surgical pain as well. My brother went early to see my Mom, and called me and told me not to come in for a few hours, Mom needed some sleep, because the hospital is so noisy most nights. I told him I was happy to know that, because I couldn't get there even if I wanted to. So he will go help her later today.

Mom got her NG tube (from her nose) removed last night! That's 1 tube down, 8 more to go. We talked in depth about what we both want done if one of us passes away before the other one. Then we spoke of our dream of getting away to a nice place for a little while. We have been stuck in the house for almost 2 years straight. Mom wanted me to get to the E.R. yesterday. My blood sugar was dangerously high, and my heart failure was acting up. I am often on oxygen at home but can't get it at the hospital and I do so much exercise/walking there, more than I could do in a week at home. I told her I really don't want to be admitted because I don't have anyone to help me the way I help Mom, and I wouldn't be able to help Mom anymore. Drove home before my sugar got too high to drive. I'm allergic to all diabetic drugs, so I need to buy more of the natural ones I take.

The parking problem turned out to be a blessing! I was offered a weekly pass (for my brother) and a monthly pass at a huge discount.

Total Collapse day for me, so job for the day was to post this post and the first pictures of my grand-daughter in the previous post. I hope to fill in some of the details of this strange saga we're going through, but need sleep right now. My body is really rebelling, but I'm sure the Lord has been carrying me for all this time. I couldn't do even 2 days of this before so many started praying for us. The power of prayer is so amazing. The scripture that says that if we have no strength of our own, if we call on God, He will give us some of His strength, it's true. Too tired to find that scripture right now, if anyone else finds it, I'd appreciate it. I think I need to hire a housekeeper to do things that don't get done due to time away and weakness. Someone to help me when I come home and collapse and can't even get something to eat, and often have to rest a few hours before I can even change my clothes. Slept in my clothes a few nights, too much pain and weakness to move or get into night clothes. zzzzzzzzzzz I keep blacking out. Better go rest. My friends are a gift from God!

Blessings, Sheila

Friday, 10 June 2011


Blogger won't allow me to center this photo right,

so click on it twice and it will open so you can see the whole picture.

My first grand daughter arrived at 6:30 p.m. Thursday night. I have 4 grandsons, but it will be fun to make girly things for a grand daughter. YAYYY! I wish so much that I could be there for my daughter and also here for my mother. I'm not doing a very good job of caring for either of them, or caring for myself.

Another blessing, a number of church members have shown up! I hope they will stay in our lives as contacts even after Mom leaves the hospital. That's a first! What a blessing! I'm just trying to understand people again. I am tired of hearing people say "If I can do anything...call me." because I called 3 to do the smallest favor for us, and they all said they wouldn't, couldn't. People should not even say "If there's anything I can do..." if they don't mean it.

Mom is a toughie! She's talkative (wears me out actually) and is reading, talking on phone, so I won't believe what that surgeon said about her never getting her strength back. My God is stronger than his science book. They are still talking about weeks to months, but I'm so amazed as how soon she is doing things. Sooner than other surgery patients half her age, and she has a raging infection and lupus to deal with.

Last night she had another bad incident of neglect. She was choking and trying to get the nurses to pay attention, then the tried to hold her down, thinking she was panicking or something, then the tube in her nose had pulled out in the scuffle, so they started blaming her for pulling it out on purpose, and insulting her. Always when I'm not there! But I can't stay 15 -24 hours a day.
They replaced the tube, with much difficulty because her throat is so swollen. So now there are 7 tubes of IV medicine going in, and 2 tubes coming out, and a colostomy.

It made me mad that they confont her/bully her when I'm not there, so I was sure I would stay all night last night. Her nurse also has lupus, but not very bad yet, so she was very compassionate about us, hoping she will never get as bad as Mom and I. I stayed until about 12, then realized if I stay in that chair all night, then I will not be able to move in the morning. I will be no use to Mom and they might even wheel me down to E.R. and I'd get admitted to another floor, where I really couldn't help Mom. So I went home about midnight, scared of what they might do to her or neglect her with. I wish I was superhuman so I could watch her at all times.

I spent so many hours each day looking for a private nurse for when I can't be there, and now Mom says she doesn't want one, because in a situation like that, the hired nurse would probably take the nurse's side, not Mom's side. I'm getting sicker and weaker, I don't know how I will do this for months. Already my heart failure has added 10 pounds (about 5 kilos) of water overnight, swelling up my legs and feet, so it means my heart is overworking. Some days I do wonder if I will die before she will.

Everything else seems to go wrong that I try to do or touch or buy etc. and I'm praying for God to chase Satan away for a while, to give me a break. Took half an hour yesterday and 1 hour today to straighten out a parking problem, the machine that prints out permits took 12 dollars of mine, because I was trying to buy a weekly pass which is $25, but at $12.55 it cancelled the transaction. So now I have to appeal to an office our capital city 8 hours away, and find out how to get a weekly ticket. I can't afford much more of this $6 a day stuff. It ate up the money I had saved for my other daughter's birthday. I'll do a story on her when this is all over. She's amazing too.

Oh...I'm living on Ensure. Too stressed to be hungry, so not getting enough food, drink, sleep, rest. I told my boss of my online job that I would not be working for a while. He kept sending me work, saying how he would lose this good client if I didn't do it. I did the first 2 then told him NO MORE! I can't even do a good job when I can only think of this crisis. So I haven't gotten any work since. I can't work a part time job through all of this.

Back to the hospital
Blessings, Sheila

Wednesday, 8 June 2011


Lots of time in hospital waiting room!

Hello my friends. I sent a letter out to most of you that said this:

Dear friends;
Due to my mother's emergency surgery last night and now critical condition, I probably won't be contacting people for a while, as our hospital's new policy requires that I stay with her as much as possible, or find others who will visit if I can't, because those without an advocate/witness get ignored, due to lack of staff. She is not expected to get to the same level of strength that she had before this month's many hospital stays, (which was not much anyway) so this will mean a huge lifestyle change for us, if she survives.
You can write to me, and I appreciate any prayers or encouragement, but please be patient if it takes a while for me to reply.
Thanks, I love my online friends.

That generated masses of emails and questions that I have no way of replying to individually, because of lack of time and energy. I decided that my blog is the perfect way to post updates and also fill people in on the details that happened, and answer questions. I have been with her 8-15 hours a day, then just come home to collapse, so not much time or energy for anything else but bare survival.

The only reason I can write this now, is because I am home collapsing. The Lord has been kind to carry me this week, but without food, water, enough sleep, all the physical and mental stresses does drain a person, even a healthy person. Today she was also much better, got past the helpless stage where she needed water and lip moisturizer and other things done for her. She can now do them.

I did not get to recover though. Got a call from our landlord. He is obsessive compulsive and has some dementia, he is over 80. He wants to bring a repairman to fix something that can be postponed. I told him that it is not a good time, can we delay? And he said that if I am not home, he will just come in on his own. Well, I don't want him looking through all our drawers and closets and chastising us again about what he THINKS our house should be like. Our house is quite clean, but due to health, it's not perfectionist clean like he demands. He needs to see some of those TV shows about HOARDING, then he would realize that we are almost perfect renters. We have to obey this man and toe the line because he could easily evict us and get $400 more for this house than what he charges us. So I will spend most of my energy cleaning up. I really don't have the strength for this. I put an ad in the paper for a housekeeper because of our weakness, now I have to do it anyway. Then when he is here, he always exhausts me with commands of getting this or that for him, moving this or that, lifting this or that. I told him last time I couldn't do anything else for him. I was wearing my oxygen at the time too. I am writing a few sentences, then clean for 5 minutes, then write more, then clean more, etc. etc.


For those of you that never got the whole story, this is how it started. Mom has had a colostomy for 35 years. She has needed it repaired for more than 20 years but surgery was too dangerous for her, so she can digest very little. She lives mostly on Ensure nutrition drink and other easily digestible foods. When she eats more, sometimes she's lucky and it digests, but every month or 2 she was in the E.R. with a blockage. It was getting more and more frequent. She also has lupus and heart failure and other health problems.

2 weeks ago today I went to the E.R. for uncontrollable pain due to my TN-trigeminal neuralgia. (See http://tinyurl.com/TNwiki). When my pain gets that bad, my heart rate goes so high that my heart has stopped, so they usually get me taken care of right away so my heart won't stop. These heart stoppages are not considered heart attacks, because they don't cause any heart damage, but they can cause death if I'm not revived. Fortunately, either the E.R. or God has continued to restart my heart. I was supposed to get a pacemaker in 2007 but Canada decided they would not spend that much money on a person who is on disability. Their quote, "Not for a person who is not contributing member of society." Well, I am a contributing member of society, worldwide, but they are thinking in terms of me earning a living and paying taxes. Since I have found that God keeps restarting my heart, I would rather NOT have a pacemaker. God will take me when HE'S ready. So anyway, they put heart monitor on me in the E.R. that day, did an ECG and blood tests, and asked me when I had a heart attack. I said I didn't know that I DID have a heart attack. The nurse said that my tests show that I did, and that it was within the last 3 days or so. I now have significant heart damage, but it's not from blocked arteries or anything, just from that TN pain, so they can't really do much to prevent it from happening again except keep me on strong pain meds, to make sure my pain doesn't get that bad again.

The Dr. sent me home within 2 hours, and I was shocked. I don't even get sent home that fast for other reasons I visit the E.R. I got home and looked online for "heart attack recovery" and it said that I was to be kept in ICU and watched for risk of stroke or another heart attack, then SLOWLY be allowed to do activities such as walking to the bathroom, and increasing slowly for a week or 2 after, then put into a heart rehab program. Anyway I didn't know this, so I was walking the far distance to my car, and stopped at the bank on the way home.

2 days later, Mom told me she needs to go to the E.R. She was having feelings that are stroke warnings. I told her that I was too sick to sit beside her, and that I needed the E.R. too. My chest pain was back and I could barely breathe. So the ambulance came and took us both. They decided to admit us both. Then my Dr. came in and told me about some new hospital policies, and that patients who don't have an advocate or witness with them most of the time, just get ignored. There are just not enough nurses to do all things for all people. I said that I wanted to sit with my mother and protect her. I asked if we could be in the same room, and they said no. So I got discharged and started caring for Mom. Mom was there for 4 days. They decided that she was so dehydrated, that this was probably the cause of her stroke-like symptoms. She started vomiting violently while in the hospital. We tried to figure out if it was one of the new medicines causing it, or other causes. Her Dr. came in and discharged her! Her nurse talked to the Dr. and said "She is sicker now than when she was admitted. She is still on IV fluids and can't even keep water down. She is vomiting A LOT! I don't think she is in any shape to go home!" He didn't listen, so I took her to the car in a wheelchair while she was vomiting into a bag. People looked strangely at us, as if they were thinking "She should be going INTO the hospital, not out!"

When we got home, we fought with it for 4 days. I stayed by her day and night, doing whatever I could, praying with her. I asked if she wanted to go back. She said she only wanted God's help, because she was too sick to go there and get sent home again. They won't help me. They are trying to get the most expensive patients to die, so the government won't have to pay for all their medical bills."

Soon she couldn't bear it. She told me to call the ambulance. After some tests, the surgeon came in and started asking us questions about what would be her wish if she died? Does she want to be put on a machine or not, and many other questions. I asked "is there a chance she could die with this?" The surgeons here are legally bound to disclose all of the risks of any procedure, so they said she would probably die within 6 hours if she didn't have surgery, but would probably die with the surgery, so if she dies on the table, how much intervention does she want? If she gets full intervention, the rest of her life she might be a tube-fed invalid, or a stroke victim, or on a life support machine. She read the paper and made her choices, and decided that surgery was SOME chance of living. Otherwise she would die within 6 hours without it. It is her worst mortal dread to have her genius mind locked in an invalid or stroke victim body. I went out to call family members, and when I got back they were wheeling her to the operating room. I said "Wait You just told me she is going to die! I want to hug her!" They wouldn't let me so I just rand along side saying I love you, and I truly thought I'd never see her again on this earth, she was crying as hard as I was. I sat in the surgery waiting room alone. I didn't know if it would take 1 hour or 20 hours for them to come out and tell me she is gone, or that she had a stroke or something.

I was praying, and so upset that I didn't have even one friend in this city who could come sit with me as my mother is dying. 45 minutes later the Dr. came out, and said she had NO dead bowel. They had opened her up for NOTHING! And not just a little 3 inch hole, but from ribs to bottom of belly.

So now I was so angry at the first doctor that sent her home while sick, which we thought caused her bowel to die, and mad at the surgeon's hasty pressure on us and false diagnosis of dead bowel, and convincing us she would die. Now she is suffering with the pain she had before she went into surgery, and the surgery pain as well!! We felt truly traumatized, we had truly believed we would never see each other again until the spirit world. The Dr. is now telling us that she will NEVER recover the strength she had 2 weeks ago. That was almost no strength, so now her whole quality of life has been compromised. Her sisters are 92 aned 94. She is 78, so it's possible that I will have to care for her in this invalid condition for 15 years. She will be tube fed through a vein for months, then a tube into her stomach, and I'll have to pour in the Ensure into the tube. Then when she has a bowel movement, it will come out into a bag on her side. She already had that, but sometimes it explodes all over the room. Mom was able to deal with it because I am always nauseated anyway, so that will just make me sicker as well. Our future looks as if it will be too much for us to handle.

I am thanking the Lord for carrying me for all those days that I stayed with mom at home and at the hospital. But I never got a chance to recover from heart attack, which will cause MORE heart damage, so we are both in trouble, with no one to help us unless we win the lottery so we can hire a nurse and housekeeper.

Will continue another day. YOUR PRAYERS HAVE ALLOWED ME TO DO ALL THIS! I know the power of prayer, but it feels like there is a limit to what our bodies can endure, so it feels like we might both die soon. Maybe me first, because she's getting closely supervised medical care. I'm not even able to get meals or enough rest or pain control.

On Sunday, my brother told me HE was supposed t have surgery on Monday. I had no clue how I would take care of both of them, since this Dr. told me not to leave anyone alone in the hospital. More feeling overwhelmed and lost. Then he postponed his surgery. At the same time, he had about 5 things go wrong with his house during this unprecedented rain, and had to go back and forth from the hospital to his house to meet different repairmen for different problems. He has too much all at once too. On Tuesday, HE was having heart palpitations and pain, couldn't think clearly. His legs almost went out on him from the long distances we have to walk in the hospital. I was ready to get HIM checked out. He is anorexic, so I'm sure he is severely dehydrated too. I talked him into drinking a bit more during the day and it got better.

Will continue another day. YOUR PRAYERS HAVE ALLOWED ME TO CARRY ON! I know the power of prayer, but even with prayer, this week it feels like there is a limit to what our bodies can endure, so it feels like we might both die soon. Maybe me first, because she's getting closely supervised medical care. I'm not even able to get meals or to control my pain or to control the huge amount of walking necessary when visiting Mom. Oh well, one hour at a time, and lots of prayer, and my online friends, will get me through. OH YEAH! I GOT A PARKING TICKET at the hospital! It just seems like so many pressures at once that it feels like Satan's trying to kill me.

Bless you all!

Friday, 20 May 2011

Optimist's Creed

Cover of book by Christina Larson

and Welleran Poltarness. Below text is in this book.

Below is the Creed

of the organization called Optimist's Club International. They began in 1919. Our Culture has changed so much even in the past 15 years. Here is a look at how society used to try

to believe and act.

The Optimist Creed

Promise Yourself ...

To be so strong that nothing can disturb

your peace of mind.

To talk health, happiness and prosperity to every person you meet.
To make all your friends feel that there is something in them.

To look at the sunny side of everything and make

your optimism come true.

To think only of the best, to work only for the best,

and to expect only the best.

To be just as enthusiastic about the success of others as you are

about your own.

To forget the mistakes of the past and press on to the

greater achievements of the future.

To wear a cheerful countenance at all times and give every living creature you meet a smile.


To give so much time to the improvement of yourself

that you have no time to criticize others.


To be too large for worry, too noble for anger, too strong for fear, and too happy to permit the presence of trouble.


Wednesday, 27 April 2011

Tiny Tina's Mini World

My youngest daughter was named Tina, because she was so tiny. She was 2 months early and only 3 pounds. She had to stay in intensive care almost until her due date, but she has been more healthy than her parents. Certainly she seemed like a miracle baby to the nurses and other mothers, whose premature babies had horrible life-long disabling conditions. I know how blessed we were, and I thank Heavenly Father for that blessing often.

Tina lived up to her name. Since she was able to crawl, she would see something the size of a piece of salt or sand on the floor and pick it up and examine it for quite a while, until her eyes crossed! lol. She still lives up to her name. Her business of making miniatures for people who like to furnish expensive doll houses, is doing really well. I am putting these pictures here to show to another friend I met recently who makes the doll houses and the furniture that goes into them. Enjoy!

Even at 2 months old, Tina fit into a child's size

baseball glove.

Now she is a happy wife and mom to soon-to-be #3

Tina's very tiny crafts.

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