This new lifestyle of mine is finally beginning to work. It took an hour this morning to get dressed. Shower, exercises, clearing, leggings, then clothes. I will have to do the clearing and exercises at least once more today. Also the massage which means taking the leggings off and putting them back on. Unless I wait til bedtime to do the massage.
Mike and I have been discussing this a lot. There is another piece of equipment they are trying to get approved through the insurance. It will take another 2 hours everyday to complete the therapy with that.
On a day that I was feeling miserable with all this, I told Mike I just can't say "thank you" to God for any of it. I can't find a way to praise Him for this. Especially when it takes a good portion of my day dealing with it. It is ugly, cumbersome and hot. Plus I have more to wear! You know those compression pants the football players wear? Yep, I need a pair of those in my size. But back to this. I can sing when I have to, but it is not joyful. I've prayed and hollered and prayed some more. But I just cannot praise the God of my life and salvation for this condition of lymphedema. I don't need another thing to add to my ever growing list.
Then Mike, my dear, sweet, loving husband responded. He told me I don't have to praise God for this storm in my life, but praise Him IN this storm. I don't have to thank God for my conditions, but thank Him for the good in my life. I know, I've been a Christian a long time. I should have known this. I should have been able to see it myself. But I didn't. I think I was just too angry.
I sing now with joy in my heart because I know sometime in the future God will show me all His glories. I look forward to Heaven. I'm not ready to go there, but I look forward to it.
I will praise Him - IN THIS STORM, not for the storm. I WILL thank Him for all the good I have. I don't have to thank Him for the myriad of health issues, but I can thank Him that my heart is healthy. I can thank Him that I don't have cancer. I can thank Him for my children, grandchildren, my mother, and more than those, I can and do thank Him for my husband. He is truly my helpmeet. He holds me while I cry. He laughs at me when I am goofy because of my meds. He helps me with my compression gear when he is around. He helps me with the household chores that I should be doing, but can't.
Lord God above, thank you so much for giving me Mike. You knew the kind of man I needed long before I knew I needed him. I love my husband evermore everyday.
Showing posts with label auto-immune disease. Show all posts
Showing posts with label auto-immune disease. Show all posts
Thursday, September 6, 2012
Tuesday, September 6, 2011
My goodness it's been a long time....
I can't believe I haven't been here since Dad passed. It's been almost 5 months. Mom is adjusting well. She has her moments as we all do. But to know he is in Heaven with the Saviour is the best knowledge and hope there is.
What have I been doing? Hmmm I've been busy for sure. I would have thought after retiring 5 years ago life would be simpler. I guess it is in that I don't have a time clock to punch in and out every day. But it is busy and many hats to wear.
I am now getting the full dose of Benlysta for my infusion each month. The drug was approved by the FDA this last Spring. That is great news. And a gift from God. I don't have to pay for it until the study is complete in 2016. That too is a gift from God. The drug is $1000 per dose and 1 dose per four weeks. If insurance pays, it is likely to only pay at 60%. The only bad thing I have noticed about this drug is that it only lasts 3 weeks and can only be taken every 4 weeks. That leaves 1 week of problems. I usually have to take twice as many pain meds during that week. And twice as many naps!
I have had a sleep study recently as well. Almost a sleep study. We didn't quite get to finish it. So we are waiting for the insurance company to approve the rest of the tests. I know I have sleep apnea, but they are testing for other disorders as well. It appears I also have hypnogogic hallucinations that are a sleep disorder. And RLS. But I haven't seen the report yet.
The neurologist, also new, said I have mild neuropathy in my big toes too. Just something else to add to the ever growing list.
We do get to take a vacation this month. YEAH! The first in 6 years. It will be a working vacation, but I think we'll have a great time. We're looking forward to getting away. Hopefully the east coast hasn't washed out to sea by the time we get there. Our daughter is trying to figure a way to hide in the trunk of the car until it is too late to turn back. However, I think we would notice an extra passenger. We are taking Mom part way. We will be dropping her in OH so she can visit friends and family.
I think that will have to do for tonight. See you all later!
What have I been doing? Hmmm I've been busy for sure. I would have thought after retiring 5 years ago life would be simpler. I guess it is in that I don't have a time clock to punch in and out every day. But it is busy and many hats to wear.
I am now getting the full dose of Benlysta for my infusion each month. The drug was approved by the FDA this last Spring. That is great news. And a gift from God. I don't have to pay for it until the study is complete in 2016. That too is a gift from God. The drug is $1000 per dose and 1 dose per four weeks. If insurance pays, it is likely to only pay at 60%. The only bad thing I have noticed about this drug is that it only lasts 3 weeks and can only be taken every 4 weeks. That leaves 1 week of problems. I usually have to take twice as many pain meds during that week. And twice as many naps!
I have had a sleep study recently as well. Almost a sleep study. We didn't quite get to finish it. So we are waiting for the insurance company to approve the rest of the tests. I know I have sleep apnea, but they are testing for other disorders as well. It appears I also have hypnogogic hallucinations that are a sleep disorder. And RLS. But I haven't seen the report yet.
The neurologist, also new, said I have mild neuropathy in my big toes too. Just something else to add to the ever growing list.
We do get to take a vacation this month. YEAH! The first in 6 years. It will be a working vacation, but I think we'll have a great time. We're looking forward to getting away. Hopefully the east coast hasn't washed out to sea by the time we get there. Our daughter is trying to figure a way to hide in the trunk of the car until it is too late to turn back. However, I think we would notice an extra passenger. We are taking Mom part way. We will be dropping her in OH so she can visit friends and family.
I think that will have to do for tonight. See you all later!
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!
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