One more week to go. Another treatment of IVIG. This time it will be for 4 hours each day to help with headaches. So if it still is bad I will ask to go longer.
It is so weird the connective tissue disease that I have and has caused swelling in my hands for a few years now is getting better since the last treatment. I will say I did push those two days I had such energy and felt so good. Suffered with my good old joint pain and muscle pain, so will be more careful when I get the next treatment. I know I just want to push it to fast, so hopeful, so excited over the possibility's of what I might be able to do again. I know I will still be chronically Ill but maybe with a little more water in the cup half full.
Lets talk about Hashimoto's Encephalopathy for a min. Still looking for stories of patients or loved ones for the 2nd edition to come out sometime next spring. We would love your story. Every time someone tells me they have bought the book and it has helped them as they do not feel so alone after their dx of HE. I feel so good inside. That is what it is about. Helping others who are dx with this rare disease. We now have T shirts that have our logo on them done and ready to ship to me to send out exciting. Then we will do a hoodie and caps. I am excited over this as I feel anything we can do to bring awareness is only going to help. We were also asked to speak to a convention of 300-500 student nurses next spring how wonderful that would be to help bring awareness to these young and upcoming students. Maybe just one would help to recognize the symptoms of one patient who has HE would be so worth it. We will see it is 15 hours away from me. Our Non profit would have to pay for the transportation, but we will see what we can figure out. Maybe if we sell enough T shirts and sweatshirts, lol. But it is an honor to be asked.
We have gained so many more HE patients to the website since the book came out. Amazing. It is suppose to be so rare, so under dx yet we are seeing such an up swing of people being dx. There still are the poor patients trying to get dx, doctors who still say they do not believe in the dx, (what) how can they say that when it is recognized government rare disease site. This is where there is more need for education even for the doctors.
Well time to go, until we meet again,
xoxoxo susie
Thursday, October 2, 2014
Wednesday, September 24, 2014
2nd Round Of IVIG Is The Side Affects Worth It?
Yes, Yes, Yes. The side affects are worth it. I did have the headache from Hell again, had to hide my head in pillows so no light would hit my face and eyes, could not move because of the pain. My pain pill did not touch the headache pain, took extra strength Tylenol instead. But here it is one week later, and I can tell you it is so worth how I feel.
Yesterday for the first time in abut two years, I took a walk that was about 1 mile long, yes I was so excited to go, I made it half way sat at a friends, for a few mins, got back on the road and finished the walk. It was so beautiful, sun shining, we were in the county, had the puppy with me on a leash. We looked at everything, cat tails, pussy willows, the golden fields. It was beautiful and such a gift to me. The IVIG has certainly helped me. I slept so good from physical activity then from physical pain. I did take my cell phone with just in case lol. But did not need it. YEAH.
So today I thought lets push it, went swimming for an hour. It felt great. But I do realize that two days in a row right now maybe a little much, as my joints in my knees are acting up and am in pain right now, but you know what I do not care as it was all worth it. It is so encouraging.
IVIG only helps, research says, if you have autoimmune diseases for which is causing the small fiber neuropathy. This is unfortunate, as it could help so many. Also, the cost of the IVIG is so high that a lot of insurance companies will not cover this treatment. This is too bad. It will add such a better higher quality of life.
It does take a week out of my life every week before I feel I can do much again. I do get a lot of the IVIG. A high dose. But they are now running a saline line with it, and next month they will be doing it for 4 hours a day verses 3 in hope that the pain wont be so bad. So 15, 16, 17 of Oct I go, and I know to expect the week after to be lost, but is it worth it? I will make it worth it. I will take more walks, clean my house, shop,. Yeah lets go.
Yesterday for the first time in abut two years, I took a walk that was about 1 mile long, yes I was so excited to go, I made it half way sat at a friends, for a few mins, got back on the road and finished the walk. It was so beautiful, sun shining, we were in the county, had the puppy with me on a leash. We looked at everything, cat tails, pussy willows, the golden fields. It was beautiful and such a gift to me. The IVIG has certainly helped me. I slept so good from physical activity then from physical pain. I did take my cell phone with just in case lol. But did not need it. YEAH.
So today I thought lets push it, went swimming for an hour. It felt great. But I do realize that two days in a row right now maybe a little much, as my joints in my knees are acting up and am in pain right now, but you know what I do not care as it was all worth it. It is so encouraging.
IVIG only helps, research says, if you have autoimmune diseases for which is causing the small fiber neuropathy. This is unfortunate, as it could help so many. Also, the cost of the IVIG is so high that a lot of insurance companies will not cover this treatment. This is too bad. It will add such a better higher quality of life.
It does take a week out of my life every week before I feel I can do much again. I do get a lot of the IVIG. A high dose. But they are now running a saline line with it, and next month they will be doing it for 4 hours a day verses 3 in hope that the pain wont be so bad. So 15, 16, 17 of Oct I go, and I know to expect the week after to be lost, but is it worth it? I will make it worth it. I will take more walks, clean my house, shop,. Yeah lets go.
Monday, September 1, 2014
RASH, HIVES, HE, IVIG, CONNECTIVE TISSUE?
Well now, lets see rashes all over my legs, on both arms, lets see what could it be? From the IVIG, the HE, Connective tissue disease, photosensitivity? So what is it from? Should I go to the dermatologist, the rheumatologist, the primary? Who should I see? I pray it is not from the IVIG for I would not want to stop getting that miracle treatment. But what ever it is I have had it for a week, slightly itchy but it reminds me of what I had back before all of my dxs of the autoimmune diseases. I had a rash/hives on the back of my legs from ankle to butt, then on the arms, and it lasted for 8 months, yes 8 months, had treatments of creams, powders, pills, steroids, I had it all, steroids would stop the intense itching for about a day or too, but when the steroids were done the itching came back. So much worst at night. I stopped wearing pantyhose, tights, had to wear the loosest clothing I could find as not to irritate it more. So watching it close.
We are taking a survey of symptoms on our Hashimoto's Encephalopathy page one of them is about rashes. Many, many of us had rashes that the doctors could not explain before the dx of HE. Weird, because why or what in the brain would cause this? Rashes I would think is a connective tissue thing, so I know why I had it, but why the others, they do not have the issues I have just the HE so really why? I think as time goes on and more research is done they will find a connection that they do not know now.
Thoughts at large. Warning, lol. I want to know why? Why are people not as giving of their patience and time and love as I was when I was a young married woman. I have some personal family issues going on, and yet the people that I depended on and family members I trusted my life with and love with all my heart have disappointed me beyond words. I have always been there for all of them, no matter the cost to me. But yet now I am getting the "I don't want to hear it" Don't bother us with this any more" It upsets us too much. Well no one stops to think of what I have endured through the years and all the problems. It is a selfishness I never thought I would see from my family. I am hurt. First I am told they want to know what is going on, mad because I keep the issues to myself, then they are upset when I do tell them.
They obviously don't recall all the times I took with my sick brother, my mom for years, their own illness, and personal issues. But here I am Ill myself for which I hate to admit too, hate it. But they are causing more stress for me then I need, they are adding more to me, then I deserve by being selfish, and self serving. Yes I understand not wanting to think about bad stuff things that make us upset, but I have had years of it, years, and kept going on, yet now, once again I am alone, dealing with issues, that everyone said they wanted to know, but really didn't.
That is enough of that. So one does not wonder why my immune system is so haywire. Maybe I should not have cared or took care of people I loved for all these years right, maybe I would not be so sick? But this is not my personality, my nature. I was brought up to care about people, love them all and I still do, even the people who hurt me, I pray for, and care about. So I guess things are just different now.
Now really that is enough, lol. Done, finished. To all that maybe reading this that would be interested, we are now selling Hashimoto's Encephalopathy T shirts. They are available on our www.hesaonline.org web site. They are very nice and would help to fund research on this very rare disease.
Hope all had a wonderful labor day weekend. I can not believe it is Sept 1, 2104.
We are taking a survey of symptoms on our Hashimoto's Encephalopathy page one of them is about rashes. Many, many of us had rashes that the doctors could not explain before the dx of HE. Weird, because why or what in the brain would cause this? Rashes I would think is a connective tissue thing, so I know why I had it, but why the others, they do not have the issues I have just the HE so really why? I think as time goes on and more research is done they will find a connection that they do not know now.
Thoughts at large. Warning, lol. I want to know why? Why are people not as giving of their patience and time and love as I was when I was a young married woman. I have some personal family issues going on, and yet the people that I depended on and family members I trusted my life with and love with all my heart have disappointed me beyond words. I have always been there for all of them, no matter the cost to me. But yet now I am getting the "I don't want to hear it" Don't bother us with this any more" It upsets us too much. Well no one stops to think of what I have endured through the years and all the problems. It is a selfishness I never thought I would see from my family. I am hurt. First I am told they want to know what is going on, mad because I keep the issues to myself, then they are upset when I do tell them.
They obviously don't recall all the times I took with my sick brother, my mom for years, their own illness, and personal issues. But here I am Ill myself for which I hate to admit too, hate it. But they are causing more stress for me then I need, they are adding more to me, then I deserve by being selfish, and self serving. Yes I understand not wanting to think about bad stuff things that make us upset, but I have had years of it, years, and kept going on, yet now, once again I am alone, dealing with issues, that everyone said they wanted to know, but really didn't.
That is enough of that. So one does not wonder why my immune system is so haywire. Maybe I should not have cared or took care of people I loved for all these years right, maybe I would not be so sick? But this is not my personality, my nature. I was brought up to care about people, love them all and I still do, even the people who hurt me, I pray for, and care about. So I guess things are just different now.
Now really that is enough, lol. Done, finished. To all that maybe reading this that would be interested, we are now selling Hashimoto's Encephalopathy T shirts. They are available on our www.hesaonline.org web site. They are very nice and would help to fund research on this very rare disease.
Hope all had a wonderful labor day weekend. I can not believe it is Sept 1, 2104.
Saturday, August 23, 2014
Next IVIG
I had an appointment with my rheumatologist Weds. He is the one that recommended for me to receive the IVIG, convinced my insurance company that I needed it. I so appreciate all his effort. But anyway went Weds to discuss what to do with the severe reaction I got from the first dose of IVIG. He and I have a plan for next month when I receive my next round of this magical IV. We will divide the dosage up into three days. We will slow the drip down so that I am not receiving it so fast. So I am thinking I will be there for about six hours instead of four and a half for three days in a row. This is fine with me. I want it to work, I want to feel better, I want to be able to walk for longer then five mins. Take the dogs for a walk. Shop with my girls. This is my goal. But I can not tolerate the headache. I know now I should have gone to the ER. But I am stubborn, but next time, I wont chance it. I will go if it gets that bad again but hopefully it wont with the changes. Dr. also said he will order a IV of some anti nausea meds also before I get the IVIG. The other pills he ordered for me I will take the three days of the IVIG to help calm the headache. We will go from here and see how this works. Crossing fingers, toes, legs, arms, lol what ever I can cross.
By Saturday of the week of the IVIG I was feeling better, slight headache, slight nausea. But not too bad, but Sunday, I felt so much better I could not believe it. I actually went out and cleaned the garage, lol. I had energy, and the pain was minimal. I was so proud of myself and so hopeful with this treatment. But then Monday came, and I slept almost all day, lol, Tuesday afternoon, slept also. lol. Cleaning the garage was worth it though, one good day is worth all the cruddy ones.
I have had a week of blood pressure issues, up, down, up, down. and a feeling of burning, the house will be a comfortable 70 degrees but to me it feels like it is 100 degrees. I have asked others who receive IVIG and it seems to be a common side affect.
Our Hashimoto's Encephalopathy HESA foundation is moving forward. We are producing our first ever t shirt, I have a design we will use for a hoodie. We will do buttons, caps, etc. We are pushing for awareness one item at a time. Also starting to take personal stories from HE sufferers for the 2nd addition of our book. Hopefully after the first of the year, at least in 2015 we hope to have it out. Along with the short documentary that my son Scott is working on. We have not moved mountains yet but we have moved small hills and I for one feel very proud of what we all have accomplished. It brings something good out of something not so good, being sick with chronic illnesses.
By Saturday of the week of the IVIG I was feeling better, slight headache, slight nausea. But not too bad, but Sunday, I felt so much better I could not believe it. I actually went out and cleaned the garage, lol. I had energy, and the pain was minimal. I was so proud of myself and so hopeful with this treatment. But then Monday came, and I slept almost all day, lol, Tuesday afternoon, slept also. lol. Cleaning the garage was worth it though, one good day is worth all the cruddy ones.
I have had a week of blood pressure issues, up, down, up, down. and a feeling of burning, the house will be a comfortable 70 degrees but to me it feels like it is 100 degrees. I have asked others who receive IVIG and it seems to be a common side affect.
Our Hashimoto's Encephalopathy HESA foundation is moving forward. We are producing our first ever t shirt, I have a design we will use for a hoodie. We will do buttons, caps, etc. We are pushing for awareness one item at a time. Also starting to take personal stories from HE sufferers for the 2nd addition of our book. Hopefully after the first of the year, at least in 2015 we hope to have it out. Along with the short documentary that my son Scott is working on. We have not moved mountains yet but we have moved small hills and I for one feel very proud of what we all have accomplished. It brings something good out of something not so good, being sick with chronic illnesses.
Thursday, August 14, 2014
First IVIG In Fusion Yesterday WOW
Wow
I am sick, the IVIG whopped my ass and they only did half. The experience its self was nothing, went easy, but the very well educated nurse said, I do not believe we can do this all in one day, she said the first loading dose is always higher. So 4 1/2 hours later I was done with my first treatment, a small headache coming but she gave me something in my IV to help minimize. Got home, felt, funny, but not like everyone talks about. Talked to my children and fellow IVIGers and said wow I am going to be a lucky one I think, and WHAM it hit. The headache from HELL. I could not believe it, all night long, I could not sleep move my head, or leave it still, no matter what I did, I hurt so bad. Thought of the ER because you can get Meningitis but sweated it out. Then I got cold, shaking, then got up at five am to go again for second treatment and wanted to cry. So much pain, and then nausea oh my, I thought I was going to loose it. I laid back on the bed, trying to close my eyes to stop the nausea, the headache, tried to call the infusion center to ask if I could skip todays, but could not get anyone, my appointment was for 8:30am so laid on the bed until 8:00 and took a fast shower, brushed my teeth, got dressed same clothes as yesterday I was to sick to care, and off I went. Got there and the great nurse I had said, oh wow maybe we should put off todays. A sigh of relief came over me in between the pain in my head and the nausea in my stomach. She called my rheumy who said, lets wait until next week to finish it. prescribed anti nausea pills, (that worked like magic). But the headache, wow, he prescribed some pills for tonight when I go to bed, said they will make me feel to dizzy to take during the day. (Oh how I wanted to take those dam pills). So went to bed, with the dogs, the little one barking for which I wanted to strangle him, the pain every time he barked. But made it through the day, now sitting here trying to get water in me as I know you are suppose to drink a lot of it and I wasn't because it hurt to swallow even the swallowing motion moved my head.
So moral of this story is, I sure as hell hope this is the answer to my autoimmune diseases, and small fiber neuropathy. Because this pain has to be worth something, right?
I am sick, the IVIG whopped my ass and they only did half. The experience its self was nothing, went easy, but the very well educated nurse said, I do not believe we can do this all in one day, she said the first loading dose is always higher. So 4 1/2 hours later I was done with my first treatment, a small headache coming but she gave me something in my IV to help minimize. Got home, felt, funny, but not like everyone talks about. Talked to my children and fellow IVIGers and said wow I am going to be a lucky one I think, and WHAM it hit. The headache from HELL. I could not believe it, all night long, I could not sleep move my head, or leave it still, no matter what I did, I hurt so bad. Thought of the ER because you can get Meningitis but sweated it out. Then I got cold, shaking, then got up at five am to go again for second treatment and wanted to cry. So much pain, and then nausea oh my, I thought I was going to loose it. I laid back on the bed, trying to close my eyes to stop the nausea, the headache, tried to call the infusion center to ask if I could skip todays, but could not get anyone, my appointment was for 8:30am so laid on the bed until 8:00 and took a fast shower, brushed my teeth, got dressed same clothes as yesterday I was to sick to care, and off I went. Got there and the great nurse I had said, oh wow maybe we should put off todays. A sigh of relief came over me in between the pain in my head and the nausea in my stomach. She called my rheumy who said, lets wait until next week to finish it. prescribed anti nausea pills, (that worked like magic). But the headache, wow, he prescribed some pills for tonight when I go to bed, said they will make me feel to dizzy to take during the day. (Oh how I wanted to take those dam pills). So went to bed, with the dogs, the little one barking for which I wanted to strangle him, the pain every time he barked. But made it through the day, now sitting here trying to get water in me as I know you are suppose to drink a lot of it and I wasn't because it hurt to swallow even the swallowing motion moved my head.
So moral of this story is, I sure as hell hope this is the answer to my autoimmune diseases, and small fiber neuropathy. Because this pain has to be worth something, right?
Monday, August 4, 2014
Hashimoto's Encephalopahty Symptoms Showing Its Self Again
Yippee, there are HE symptoms starting again. Scares the hell out of me. Seeing things out of the side vision and they are moving. I feel myself fighting to get my words out of my mouth, to say the right word for the write thing. Really balance off worst then ever, tipping over standing still.
I was driving down a side road Saturday coming from helping a friend. As I was driving a house in front of me, had a drive way with a car in it. Well the car was backing up, so I slowed myself down, the car was still moving, but as I got closer the car was still, had not moved, not at all, nobody in it, Nobody. WOW my heart pounded. Got home, and thought be careful Susie, be careful driving. As the panic wore off, I started to notice things moving so I thought in my vision, then I had hearing hallucinations start. I kept getting up to see if our dogs were barking in their kennels and they were sleeping finally asked my husband if he heard anything. He looked at me and said, no. But again I thought wow, I have bad hearing to begin with, I don't hear things I should now I am hearing things that are not there.
I do not know if I should notify the neuro or not, but I am starting the IVIG next week, so if I can hold off until then. But then the back of my mind I think maybe I need a ten day pack of steroids to get it back in its place. Not sure what to do. HE is such a weird, disease, with everyone who has can have different symptoms. I know my neuro would make me have my thyroid antibodies taken, but It does not matter to me, because they have been above normal for a long time, and the antibodies levels do not really co inside with the symptoms of HE. So just thinking, watching my symptoms close. But not going to far driving.
I will be making an eye appointment with a MD because of the Sjogrens and other issues I carry with me. I can make sure then that there is nothing wrong with my eyes, and it is coming from the brain. But I am sure it is. Stress has taken its toll. But I maybe able to halt it before it gets worst. Come on IVIG. I know they say it can take 3 months to help but, I have so much hope.
I was driving down a side road Saturday coming from helping a friend. As I was driving a house in front of me, had a drive way with a car in it. Well the car was backing up, so I slowed myself down, the car was still moving, but as I got closer the car was still, had not moved, not at all, nobody in it, Nobody. WOW my heart pounded. Got home, and thought be careful Susie, be careful driving. As the panic wore off, I started to notice things moving so I thought in my vision, then I had hearing hallucinations start. I kept getting up to see if our dogs were barking in their kennels and they were sleeping finally asked my husband if he heard anything. He looked at me and said, no. But again I thought wow, I have bad hearing to begin with, I don't hear things I should now I am hearing things that are not there.
I do not know if I should notify the neuro or not, but I am starting the IVIG next week, so if I can hold off until then. But then the back of my mind I think maybe I need a ten day pack of steroids to get it back in its place. Not sure what to do. HE is such a weird, disease, with everyone who has can have different symptoms. I know my neuro would make me have my thyroid antibodies taken, but It does not matter to me, because they have been above normal for a long time, and the antibodies levels do not really co inside with the symptoms of HE. So just thinking, watching my symptoms close. But not going to far driving.
I will be making an eye appointment with a MD because of the Sjogrens and other issues I carry with me. I can make sure then that there is nothing wrong with my eyes, and it is coming from the brain. But I am sure it is. Stress has taken its toll. But I maybe able to halt it before it gets worst. Come on IVIG. I know they say it can take 3 months to help but, I have so much hope.
Saturday, August 2, 2014
Warning God is the Topic
Wow two posts in one week gee I think it is because I have not felt like I can do too much more lol.
I just want to say, as much as we have been through, the sickness, the financial burden of having only one income when I had to quit my job. Our home burning down three months after the diagnose of Hashimoto's Encephalopathy, my mom passing away three weeks after the house burning. My mom was my best friend, my husbands best friend. So the last has been beyond words. My husband who is a recovering alcoholic, started to drink again. I was diagnosed with even more autoimmune related diseases. I just keep piling them up. lol. Still struggling with our home insurance after two and a half years, the lawyer has already taken all of our replacement money for our goods we lost. (Forty years of memories). We have nothing.
But we are alive. We were saved from the fire. Miracle, yes I believe so.
I have had my share of miracles in my life I believe God has given us. I am not a showy religious person, never have been not comfortable sharing the word with others, or my feelings I have deep in my soul. But they are there.
The night of our fire, I went to bed, begging God for us not to lose our home to financial reasons, ( I was not working because of the illnesses I had, neurologist told me I would die if I kept working) so we were struggling so hard, to stay a float, so I went to bed Feb 23, 2012 begging God to help me come up with a way to save my beloved home. A few hours later, we were woke up with the miracle of the paper boys going by seeing the fire on the porch. They knocked, and knocked to get us to hear them, (we slept on a 2nd floor, and both are very hard of hearing) But the miracle is they woke us up and we did get out as the flames were licking behind us.
The feeling that God let me down was so heavy in my heart. He instead of helping me save my home he took it all away, everything in it, everything, nothing was saved, a 5,000 ft old Victorian home gone. I could not see beyond what I felt was a betrayal of my believes. I never prayed for myself, always for someone else. Never for me, as I felt I had strength for myself, but others needed my help praying for them. So the one of the few times I asked for myself, and family, I was betrayed. But how could I feel this way, I was alive, husband, was alive, dog, was alive. What is wrong with me?
So as the long job of documenting items contacting people, trying to find a place to live, I prayed once again, begging God to please keep my mom healthy, alive (she had dementia in the nursing home and had gone from good to bad, to good again several times). I begged him to not let her die now, I did not think I could handle one more thing.
Well after the fire, my husband was dx with macular degeneration at the age of 57 very young and started 4000.00 shots monthly for stopping the progression.
Jump ahead three weeks and I get a call from my moms nursing home, and they tell me my mom is serious, she could die anytime. What God? Did you leave me again? I wont be able to take this. But on I went and sat by my best friends bedside. I watched my mom decline for about 5 days. I was numb now. I was numb. Where are you God? What have we done? Yes my cup is half full, I am alive, but my god, what more can we go through.
So Mom passed away with me laying across her sobbing. A women so full of life robbed from her from the dementia, the fun loving, smart, women, mom now God took her body from me too.
I am numb, the Hashimoto's Encephalopathy had taken away almost all of my emotions, I was numb, could not feel deep in my soul anything, good, bad, happy, sad. Except for the day my mom died.
So we found a home to move into quick, bought a couch, and friends gave us chairs, and a kitchen table, along with a dining room table, my children brought us clothes to wear and we had moms funeral. With my brothers meeting here because I am the only one in town. I am numb. Please God let me get through this. Please God don't let me have a flare up, so I can not talk, or walk. Please God don't let me have a flare up of any of my other autoimmune disease that will hamper my ability to function during the funeral. Please God.
So then my husband started to drink more, I can not take it, making my stress worst, doctors are saying to leave because the stress is making my diseases progress faster. But I said words in front of God for Better or For Worst. So I need to help him in any way I can. But now I am afraid to pray for anything I am afraid if I pray I will get something worst then what I am dealing with already.
Well just this week have I felt all of a sudden that God loves me. He is there for me. He is watching over me, and my husband, children and grand daughter. He is there. He has a purpose for us. I need to believe again, I need not to be afraid of him. He is in my heart again where he belongs.
The Hashimoto's Encephalopathy causes me to forget to pray sometimes, memory problems is an issue with us sufferers. But God knows what I am thinking and when I say to someone I will pray for you I am even if I don't actually say a prayer he knows my intentions are good.
So God I love you and thank you for everything you have given us, even my autoimmune diseases, Bob's issues we are fighting through, the strength to get through everything that we have gone through. Thank you.
I just want to say, as much as we have been through, the sickness, the financial burden of having only one income when I had to quit my job. Our home burning down three months after the diagnose of Hashimoto's Encephalopathy, my mom passing away three weeks after the house burning. My mom was my best friend, my husbands best friend. So the last has been beyond words. My husband who is a recovering alcoholic, started to drink again. I was diagnosed with even more autoimmune related diseases. I just keep piling them up. lol. Still struggling with our home insurance after two and a half years, the lawyer has already taken all of our replacement money for our goods we lost. (Forty years of memories). We have nothing.
But we are alive. We were saved from the fire. Miracle, yes I believe so.
I have had my share of miracles in my life I believe God has given us. I am not a showy religious person, never have been not comfortable sharing the word with others, or my feelings I have deep in my soul. But they are there.
The night of our fire, I went to bed, begging God for us not to lose our home to financial reasons, ( I was not working because of the illnesses I had, neurologist told me I would die if I kept working) so we were struggling so hard, to stay a float, so I went to bed Feb 23, 2012 begging God to help me come up with a way to save my beloved home. A few hours later, we were woke up with the miracle of the paper boys going by seeing the fire on the porch. They knocked, and knocked to get us to hear them, (we slept on a 2nd floor, and both are very hard of hearing) But the miracle is they woke us up and we did get out as the flames were licking behind us.
The feeling that God let me down was so heavy in my heart. He instead of helping me save my home he took it all away, everything in it, everything, nothing was saved, a 5,000 ft old Victorian home gone. I could not see beyond what I felt was a betrayal of my believes. I never prayed for myself, always for someone else. Never for me, as I felt I had strength for myself, but others needed my help praying for them. So the one of the few times I asked for myself, and family, I was betrayed. But how could I feel this way, I was alive, husband, was alive, dog, was alive. What is wrong with me?
So as the long job of documenting items contacting people, trying to find a place to live, I prayed once again, begging God to please keep my mom healthy, alive (she had dementia in the nursing home and had gone from good to bad, to good again several times). I begged him to not let her die now, I did not think I could handle one more thing.
Well after the fire, my husband was dx with macular degeneration at the age of 57 very young and started 4000.00 shots monthly for stopping the progression.
Jump ahead three weeks and I get a call from my moms nursing home, and they tell me my mom is serious, she could die anytime. What God? Did you leave me again? I wont be able to take this. But on I went and sat by my best friends bedside. I watched my mom decline for about 5 days. I was numb now. I was numb. Where are you God? What have we done? Yes my cup is half full, I am alive, but my god, what more can we go through.
So Mom passed away with me laying across her sobbing. A women so full of life robbed from her from the dementia, the fun loving, smart, women, mom now God took her body from me too.
I am numb, the Hashimoto's Encephalopathy had taken away almost all of my emotions, I was numb, could not feel deep in my soul anything, good, bad, happy, sad. Except for the day my mom died.
So we found a home to move into quick, bought a couch, and friends gave us chairs, and a kitchen table, along with a dining room table, my children brought us clothes to wear and we had moms funeral. With my brothers meeting here because I am the only one in town. I am numb. Please God let me get through this. Please God don't let me have a flare up, so I can not talk, or walk. Please God don't let me have a flare up of any of my other autoimmune disease that will hamper my ability to function during the funeral. Please God.
So then my husband started to drink more, I can not take it, making my stress worst, doctors are saying to leave because the stress is making my diseases progress faster. But I said words in front of God for Better or For Worst. So I need to help him in any way I can. But now I am afraid to pray for anything I am afraid if I pray I will get something worst then what I am dealing with already.
Well just this week have I felt all of a sudden that God loves me. He is there for me. He is watching over me, and my husband, children and grand daughter. He is there. He has a purpose for us. I need to believe again, I need not to be afraid of him. He is in my heart again where he belongs.
The Hashimoto's Encephalopathy causes me to forget to pray sometimes, memory problems is an issue with us sufferers. But God knows what I am thinking and when I say to someone I will pray for you I am even if I don't actually say a prayer he knows my intentions are good.
So God I love you and thank you for everything you have given us, even my autoimmune diseases, Bob's issues we are fighting through, the strength to get through everything that we have gone through. Thank you.
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