Rachael is home this week. She got in just before our snow storm...hopefully the last one of the season! It's been beautiful weather.
I was able to get my infusion this week too. I am so glad. It gives me 2 and a 1/2 to 3 good weeks physically.
Sunday was my Father-in-Law's 40 year at Grace Baptist Church. It was an awesome and inspiring service. All the kids and most of the grands and greats were there. Several fellow preachers were there as well. Lots of special music too. Not from me though, I am still working on my lungs getting better. I got carried away while we were all singing "It is Well with my Soul". I love that song, but I ended up having an asthma attack because of it. Oh well, it was worth it all.
Tonight we watched Jesse perform her last vocal concert as an elementary student. She is growing up far too quick! They all are!
Nico and Collin spent the night this week too. Nico is so funny. I would start coughing and he'd mock me, then laugh. It was so cute! Collin enjoys hiding and tents. He's a hoot to watch.
Next week I see my PCP and Mom gets her cataract surgery. I know she is anxious. I am excited for her. I know it will help her vision quite a bit.
This was a good week. I praise God for it!
Thursday, March 25, 2010
Saturday, March 20, 2010
What is Lupus?
I was diagnosed with Lupus about 15 years ago. As I look back, I can see symptoms a lot farther. Lupus is a strange and complex 'disease'. About 20 years ago I had a doctor say in passing that I was 'allergic to myself'. I laughed even though it sounded very accurate.
In the beginning, I felt really sorry that I just couldn't do things like usual. I think my poor husband thought I was being lazy. I know other folks did. It isn't that I didn't want to do things, but that I didn't have the energy to do them. Even simple things like doing the dishes or the floors. There was pain to deal with too. But there weren't any reasons for the pain. At least not that we could find. I could be standing in the kitchen decorating a cake and just start hurting. I thought at first it was the height of the counter top. I am a little on the short side, so that made sense. Then I thought it could be the kind of shoes I wore (and more likely just being barefoot). But the pain would be enough to make me go sit for a while. We only had 3 children at that time and the youngest was just a baby. I think this was close to the beginning of my Lupus symptoms.
Lupus is an auto-immune disease. It is not to be confused with AIDS which is an auto-immune deficiency. There is a big difference. You will have to look it up.
For me, lupus is inflammation everywhere! Inflammation internally and externally. My skin is affected by the lupus. I have to be very careful of sun exposure. It can cause extreme burns and burn-like conditions within just a few minutes. I wear sunscreen with an SPF of 75. I also wear sunglasses, long sleeves, gloves and hats. The inflammation is in my organs, joints and skin. I have had several biopsies for whatever reason. They all show chronic inflammation. The biopsies may or may not show anything else. With Lupus I am more susceptible to illnesses, particularly lung problems. My immune system is compromised. It takes twice as long or more to heal even for simple things as scratches.
Lupus in general is a disease where your antibodies see normal tissue and normal cells as foreign. The antibodies are designed to attack anything foreign in the body. So, when the antibodies get confused and see normal tissue as foreign, then it attacks to try to heal the body. It is a constant battle. Lupus effects everyone differently. My mom has lupus, but hers is different from mine. Some symptoms are the same and some are not.
Lupus takes your energy away. There is fatigue, pain, swelling, fever and rashes. If you have Lupus you will more than likely to have more of the over 200 auto-immune diseases. I have about 5 of them, Rheumatoid Arthritis, Alopecia, Asthma, and Reynauds Syndrome.
There are tests to determine if you have Lupus, but the tests are not completely accurate. They can read false even if you have symptoms. A Rheumatologist is often recommended to treat Lupus. Find a good doctor. You need one that will listen! If you don't think the doctor is serious in treating you, find one that is. People with Lupus are fighting a debilitating disease. There is no reason to fight the doctor too. Lupus is often considered an invisible handicap. You don't look sick or disabled, but you have difficulty functioning and performing even simple tasks.
There are medicines that help alleviate the symptoms of Lupus. There are studies trying to find a cure for Lupus. Lupus can go into remission. When a flare hits it can be mild or severe, but either way it can be very difficult. I am in a study for a Lupus medication. I have participated for 3 years now. I am now getting the real medicine and it helps for about 2-3 weeks. The doctor placed an IV port in my chest to receive the infusion. I actually look forward to the infusion because I know it will help for a while. Plaquenil is often used for Lupus, but people of color need to be careful. They may have adverse reactions to it. It takes 3-6 months for plaquenil to work. There are anti-iflammatories and pain meds. Some people will need anti-depressants. It can be very depressing to be constantly in pain and immobile.
My auto-immune diseases (AI) are not my only health issues, but those are for another day. Right now I am doing ok. I won't say great. But everything seems to under control. I have been fighting off bronchitis for 3 weeks now. The coughing is hanging on and I knew it would. I had a nasty yeast infection throughout my system for months, but I think it is finally gone. Praise the Lord!
By the way, God is my source of strength and hope. My husband is next. He has come to realize what my disease does to me. When I say, "I am done", he knows it is time for me to stop everything and rest a while. He has taken over most of the household chores. I do what I can when I can and he does the rest. He loves me inspite of my health or lack of it. I have the world's best husband!
In the beginning, I felt really sorry that I just couldn't do things like usual. I think my poor husband thought I was being lazy. I know other folks did. It isn't that I didn't want to do things, but that I didn't have the energy to do them. Even simple things like doing the dishes or the floors. There was pain to deal with too. But there weren't any reasons for the pain. At least not that we could find. I could be standing in the kitchen decorating a cake and just start hurting. I thought at first it was the height of the counter top. I am a little on the short side, so that made sense. Then I thought it could be the kind of shoes I wore (and more likely just being barefoot). But the pain would be enough to make me go sit for a while. We only had 3 children at that time and the youngest was just a baby. I think this was close to the beginning of my Lupus symptoms.
Lupus is an auto-immune disease. It is not to be confused with AIDS which is an auto-immune deficiency. There is a big difference. You will have to look it up.
For me, lupus is inflammation everywhere! Inflammation internally and externally. My skin is affected by the lupus. I have to be very careful of sun exposure. It can cause extreme burns and burn-like conditions within just a few minutes. I wear sunscreen with an SPF of 75. I also wear sunglasses, long sleeves, gloves and hats. The inflammation is in my organs, joints and skin. I have had several biopsies for whatever reason. They all show chronic inflammation. The biopsies may or may not show anything else. With Lupus I am more susceptible to illnesses, particularly lung problems. My immune system is compromised. It takes twice as long or more to heal even for simple things as scratches.
Lupus in general is a disease where your antibodies see normal tissue and normal cells as foreign. The antibodies are designed to attack anything foreign in the body. So, when the antibodies get confused and see normal tissue as foreign, then it attacks to try to heal the body. It is a constant battle. Lupus effects everyone differently. My mom has lupus, but hers is different from mine. Some symptoms are the same and some are not.
Lupus takes your energy away. There is fatigue, pain, swelling, fever and rashes. If you have Lupus you will more than likely to have more of the over 200 auto-immune diseases. I have about 5 of them, Rheumatoid Arthritis, Alopecia, Asthma, and Reynauds Syndrome.
There are tests to determine if you have Lupus, but the tests are not completely accurate. They can read false even if you have symptoms. A Rheumatologist is often recommended to treat Lupus. Find a good doctor. You need one that will listen! If you don't think the doctor is serious in treating you, find one that is. People with Lupus are fighting a debilitating disease. There is no reason to fight the doctor too. Lupus is often considered an invisible handicap. You don't look sick or disabled, but you have difficulty functioning and performing even simple tasks.
There are medicines that help alleviate the symptoms of Lupus. There are studies trying to find a cure for Lupus. Lupus can go into remission. When a flare hits it can be mild or severe, but either way it can be very difficult. I am in a study for a Lupus medication. I have participated for 3 years now. I am now getting the real medicine and it helps for about 2-3 weeks. The doctor placed an IV port in my chest to receive the infusion. I actually look forward to the infusion because I know it will help for a while. Plaquenil is often used for Lupus, but people of color need to be careful. They may have adverse reactions to it. It takes 3-6 months for plaquenil to work. There are anti-iflammatories and pain meds. Some people will need anti-depressants. It can be very depressing to be constantly in pain and immobile.
My auto-immune diseases (AI) are not my only health issues, but those are for another day. Right now I am doing ok. I won't say great. But everything seems to under control. I have been fighting off bronchitis for 3 weeks now. The coughing is hanging on and I knew it would. I had a nasty yeast infection throughout my system for months, but I think it is finally gone. Praise the Lord!
By the way, God is my source of strength and hope. My husband is next. He has come to realize what my disease does to me. When I say, "I am done", he knows it is time for me to stop everything and rest a while. He has taken over most of the household chores. I do what I can when I can and he does the rest. He loves me inspite of my health or lack of it. I have the world's best husband!
Friday, March 5, 2010
Mixed up thoughts
I was going to put how I have been sick with bronchitis all week. With all these new meds added to the old ones. I've been inside except to the doctor. I missed the Y all week, church, other appointments and now my grandkids. Really stinks to be sick.
But, I received a call today from the USAG office. Sentencing for the man who assaulted my dad will be in 19 days. Although we have waited for this day, now that it is definite, it is also sad. How a man let one moment of anger ruin the rest of his life as well as ours. And his own family. Dad will never be the same. But, nothing I do will fix that. This man will never be the same either. He can get better. He can, if he lets God in and allows Him to help him.
I have forgiven this man, I feel sorry for this man, but I also feel the need for him to pay the price for his crime.
I am not angry. I am not happy to see him "get his". I do believe you have to be held accountable and responsible for your decisions and actions. Even if these actions are out of character for you.
This man does not seem like someone who goes around beating up feeble old men. I think there were probably a variety of things that contributed to his actions. These actions resulted in a broken and shattered humorous bone at the shoulder joint, banged up head, and emotional trauma to my 82 yr. old father. My father is in the final stage of dementia. He was in the hospital to get behavior meds under control.
Yes, he was aggressive when he was admitted. However, at the time of the incident, he was ready to come home. His meds had him stabilized and he was back to his "normal" self.
The attack was unprovoked. I know this because I have watched the video of the attack myself. I watched a few times. I just couldn't believe it was actually happening.
There wasn't a trial. The man plead guilty. Now it is time for sentencing. We will be going. I don't know if we will say how this has affected us or not. We gave our statements of it's impact to the USAG office and the judge has set the date for sentencing.
I hope and pray this never happens to anyone ever again. I know it probably will. But, I still hope and pray.
But, I received a call today from the USAG office. Sentencing for the man who assaulted my dad will be in 19 days. Although we have waited for this day, now that it is definite, it is also sad. How a man let one moment of anger ruin the rest of his life as well as ours. And his own family. Dad will never be the same. But, nothing I do will fix that. This man will never be the same either. He can get better. He can, if he lets God in and allows Him to help him.
I have forgiven this man, I feel sorry for this man, but I also feel the need for him to pay the price for his crime.
I am not angry. I am not happy to see him "get his". I do believe you have to be held accountable and responsible for your decisions and actions. Even if these actions are out of character for you.
This man does not seem like someone who goes around beating up feeble old men. I think there were probably a variety of things that contributed to his actions. These actions resulted in a broken and shattered humorous bone at the shoulder joint, banged up head, and emotional trauma to my 82 yr. old father. My father is in the final stage of dementia. He was in the hospital to get behavior meds under control.
Yes, he was aggressive when he was admitted. However, at the time of the incident, he was ready to come home. His meds had him stabilized and he was back to his "normal" self.
The attack was unprovoked. I know this because I have watched the video of the attack myself. I watched a few times. I just couldn't believe it was actually happening.
There wasn't a trial. The man plead guilty. Now it is time for sentencing. We will be going. I don't know if we will say how this has affected us or not. We gave our statements of it's impact to the USAG office and the judge has set the date for sentencing.
I hope and pray this never happens to anyone ever again. I know it probably will. But, I still hope and pray.
Friday, February 12, 2010
Doctors and more doctors and tests and more tests
Good grief. One doctor after another. I see a doctor on the average of 2 per week. I get poked, prodded, squished, xrayed, and so on. Some appointments are good. Like my infusion...I am happy to go get that one. It makes me feel good, well better, for 3 weeks. The forth week, let's just say don't leave home without lortabs. For that matter, don't stay home without lortabs!
Lately, I have had 3 biopsies and one culture done. All 4 tests have come back negative for whatever...negative mostly for infection. But...something is wrong. It's just that no one knows what it is! If you don't know what it is, how can you treat it?
I was given a steroid cream to use on a rash, actually 3 different ones. All three rash locations were different, yet something the same. The tests showed no fungus, no infection, nothing. So, the steroid cream didn't work. Then it was the anti-fungal cream. Still not working. Then the anti-fungal pill...may be working. But I am not sure on that one.
So, what in the world is going on with my body?
Earlier this week I had a stress test. First they said, chemical and not a treadmill. I get there and they decide the treadmill. I am leery about this. I know my limitations. But, I did make it through...barely. Then today, the dreaded mammogram. Strip from the waist up and put this sheet over your shoulders. Then walk down the hall to the exam room. Then throw the sheet over your shoulder to expose yourself. Then has the tech adjust the machine to just the right height. You need to stand in an awkward position, and she manually lifts one breast to the lower platform of the machine. Holds it there while lowering the top platform until you are compressed completely. Then she runs and hides behind the safety glass, tells you to hold your breath until the machine is done taking your picture. Afterward, she lets you stand there until she is sure the photo is clear. Then, she turns you, positions the other breast on the wretched machine, lowers the compression plate, then takes her position as the machine again takes your picture. All done! NO! The machine is then set to a 45* angle and you start over with each side. Only this time the machine hangs up on my IV port! Stop, reposition, start again.
I despise this test! I know it has it's place, but not for me! The other exam is next month. It is also humiliating.
I wanted my husband to go with me today, because I wanted him to see what I had to go through so he would understand why I hated it. "Big deal, it's just an xray!" But he was too busy. Rather convienent I think. So, I am going to find a vice and 2 plates, one metal and the other acryllic. Just like mine were. Then I am going carefully place his parts in the vice and snap a few pictures...of his contorted face!
I will insist on the next one though. He thinks it is terrible to have a prostate exam 2-3 times in his life. Poor baby. What does he think we women go through every year, and then multiple times when pregnant?!
Don't get me wrong. I love my husband dearly! We have been married 32 years. But, he needs to really understand a few things. I think I have been patient long enough. Time for him to see what I do to try to stay healthy for him.
Lately, I have had 3 biopsies and one culture done. All 4 tests have come back negative for whatever...negative mostly for infection. But...something is wrong. It's just that no one knows what it is! If you don't know what it is, how can you treat it?
I was given a steroid cream to use on a rash, actually 3 different ones. All three rash locations were different, yet something the same. The tests showed no fungus, no infection, nothing. So, the steroid cream didn't work. Then it was the anti-fungal cream. Still not working. Then the anti-fungal pill...may be working. But I am not sure on that one.
So, what in the world is going on with my body?
Earlier this week I had a stress test. First they said, chemical and not a treadmill. I get there and they decide the treadmill. I am leery about this. I know my limitations. But, I did make it through...barely. Then today, the dreaded mammogram. Strip from the waist up and put this sheet over your shoulders. Then walk down the hall to the exam room. Then throw the sheet over your shoulder to expose yourself. Then has the tech adjust the machine to just the right height. You need to stand in an awkward position, and she manually lifts one breast to the lower platform of the machine. Holds it there while lowering the top platform until you are compressed completely. Then she runs and hides behind the safety glass, tells you to hold your breath until the machine is done taking your picture. Afterward, she lets you stand there until she is sure the photo is clear. Then, she turns you, positions the other breast on the wretched machine, lowers the compression plate, then takes her position as the machine again takes your picture. All done! NO! The machine is then set to a 45* angle and you start over with each side. Only this time the machine hangs up on my IV port! Stop, reposition, start again.
I despise this test! I know it has it's place, but not for me! The other exam is next month. It is also humiliating.
I wanted my husband to go with me today, because I wanted him to see what I had to go through so he would understand why I hated it. "Big deal, it's just an xray!" But he was too busy. Rather convienent I think. So, I am going to find a vice and 2 plates, one metal and the other acryllic. Just like mine were. Then I am going carefully place his parts in the vice and snap a few pictures...of his contorted face!
I will insist on the next one though. He thinks it is terrible to have a prostate exam 2-3 times in his life. Poor baby. What does he think we women go through every year, and then multiple times when pregnant?!
Don't get me wrong. I love my husband dearly! We have been married 32 years. But, he needs to really understand a few things. I think I have been patient long enough. Time for him to see what I do to try to stay healthy for him.
Thursday, January 28, 2010
Winter Strikes Again
Winter is at it again. Rain, Freezing Rain, Sleet and Snow. Ice on the windshields and wet roads. The heater is working great, no power flashes...yet, and a pot of beans on to cook. Had Malt-O-Meal for breakfast. I have had a cup of Chai Latte tea and then a cup of Mint tea. Coffee is brewing.
This is a work inside day. We knew it was coming, so we planned ahead. Except...we ran out of milk already. Mike is going to go to Braum's and pick some up. School is out all around. County offices have closed some of their doors. No appointments today! We even rented a few movies.
So, I begin with my study on Esther. I'll be teaching it again this next Monday. Esther is such a cool book! After that I will work on my office until my work table is clear. Then I will create! I haven't made any jewelry in over a month. Time to get busy. I have a few repairs to do and a custom order or two.
I love lazy days. I'll probably even take a nap later! Enjoy!
This is a work inside day. We knew it was coming, so we planned ahead. Except...we ran out of milk already. Mike is going to go to Braum's and pick some up. School is out all around. County offices have closed some of their doors. No appointments today! We even rented a few movies.
So, I begin with my study on Esther. I'll be teaching it again this next Monday. Esther is such a cool book! After that I will work on my office until my work table is clear. Then I will create! I haven't made any jewelry in over a month. Time to get busy. I have a few repairs to do and a custom order or two.
I love lazy days. I'll probably even take a nap later! Enjoy!
Sunday, January 10, 2010
A Stroll Down Memory Lane
Today was an awesome one in the Lord. We had back to back services with a pot luck lunch thrown in. Bro. Jim N. is leaving us here in OK, getting married in NM and moving to CA with his new bride. Bro. Jim has been a big part of our church here in Del City. He will be 83 later this month. But he is so young at heart. I think his desire to serve God is what has kept him so 'young'.
We will certainly miss Bro. Jim, but don't let that stop you from serving God here with us!
The work continues as always.
Bro. Jim, enjoy your new life. Get those Californians straight about God! Come see us every now and then. We love you. Jean, keep up with him. It will be a challenge!
We will certainly miss Bro. Jim, but don't let that stop you from serving God here with us!
The work continues as always.
Bro. Jim, enjoy your new life. Get those Californians straight about God! Come see us every now and then. We love you. Jean, keep up with him. It will be a challenge!
Saturday, January 9, 2010
Happy New Year
I hope you all have had a great start to the new year. I've decided to change my blog around just a bit. I will try to whine less and praise more.
This year is starting out extremely cold. However, one of our dear ladies at church gave me an electric heated throw! How awesome is that? I love it. Mike uses it when I am in the other room. Plus, we left our fireplace out in the front room. I know it is only cardboard, but....it's the ambiance!
I am also going to try to get my office/studio clean and organized by the end of January. If I do well, I will post pictures.
My health is about the same. I have added Eczema to my list of ailments. It itches so much! However, the steroid cream is starting to help. I managed to stay off all steroids for 3+ years. I guess a little cream for a couple weeks won't kill me.
Ok, let's see if we can "get 'er done" this month with all the new stuff going on. 2009 is over, is still has issues to resolve, but 2010 has just begun!
This year is starting out extremely cold. However, one of our dear ladies at church gave me an electric heated throw! How awesome is that? I love it. Mike uses it when I am in the other room. Plus, we left our fireplace out in the front room. I know it is only cardboard, but....it's the ambiance!
I am also going to try to get my office/studio clean and organized by the end of January. If I do well, I will post pictures.
My health is about the same. I have added Eczema to my list of ailments. It itches so much! However, the steroid cream is starting to help. I managed to stay off all steroids for 3+ years. I guess a little cream for a couple weeks won't kill me.
Ok, let's see if we can "get 'er done" this month with all the new stuff going on. 2009 is over, is still has issues to resolve, but 2010 has just begun!
Subscribe to:
Posts (Atom)