There are reasons people who don’t feel well are grumpy especially chronically ill people. Their pain is poorly managed; it’s hard to function in constant pain. The only time they leave the house is for a Dr’s appointment some of those Drs don’t believe them. Some of the Drs have to be educated on the disease and some just don’t seem to care. Because they seldom leave home they become very lonely because everyone else’s lives march on. People who they thought would always be around no longer call or barely answer texts. But it’s understandable, it’s hard to be around grumpy people or know what to talk about.
Because they use all their energy trying to take care of themselves and somehow stay connected to their kids and spouses their yards are over grown and their pets are not as well cared for as they should be. Sometimes the neighbors instead of visiting or pulling some weeds they complain and call the police because the dogs made a little noise.
Food doesn’t taste good and makes them sick so they listen in the other room as the rest of the family laughs around the dinner table. While that happy time is happening they are trying to keep themselves from “melting” away.
Because they don’t want to endanger other people they don’t drive. It’s hard to go someplace if you have to decide who to ask for a ride every time. All these reasons and so many more and we haven’t even touched on the guilt that is everywhere. So, be patient, reach out or at least don’t call the cops. Most of all, assume they are doing the best they can because isn’t that what everyone is doing?
Friday, October 20, 2017
Wednesday, June 28, 2017
Letting Go...
Things have been tough around here. I've had some improvements but occasionally have anaphylaxis and my emotions have been running high. Emotions, unfortunately, can make me react so it's better to keep them calm. 😳
In March I applied for disability; this week I finally got notice that it had been declined. I wasn't really too surprised- I had been told only about 20% get approved their first time. But I did feel like I had my last hope pulled away. Yesterday I called a lawyer so we are hoping he can help us more but it is really up to our Drs reports. He told us exactly what kind of information my records needed to show. Just before we got off the phone he said I probably would not be approved this next time either, we will probably have to have a hearing to get it approved. That was it, my heart could handle no more. The appeals and hearing process could take at least six more months. In the meantime there are so many needs.
I have been fighting tears since yesterday morning. The heaviness in my chest was too much to handle tonight. I finally remembered about the Atonement and how it is always here for me to call on. I stopped what I was doing and said a prayer and ask Jesus to take my pain through His atonement. The pain immediately left and my burden was lightened.
I then told my Heavenly Father about my biggest stress- our finances- we live pretty frugally and when our kids have big activities they have to earn their own money, and not from us. They've worked hard for those things.
We have no money(-$600) in our bank right now and we are owing a house payment. I told Heavenly Father I needed the answer to hit me in the head. I was in no way in a mindset to understand a "quiet prompting". I also ask for Doug to be blessed to have strength, patience, ability to listen and act on promptings. I feel peace, hopefully it will continue but for now I know I have a Heavenly Father who loves me unconditionally and I have a Savior who has already felt everything we feel, we just have to let go of what we think we have "control"of and let atonement work.
In March I applied for disability; this week I finally got notice that it had been declined. I wasn't really too surprised- I had been told only about 20% get approved their first time. But I did feel like I had my last hope pulled away. Yesterday I called a lawyer so we are hoping he can help us more but it is really up to our Drs reports. He told us exactly what kind of information my records needed to show. Just before we got off the phone he said I probably would not be approved this next time either, we will probably have to have a hearing to get it approved. That was it, my heart could handle no more. The appeals and hearing process could take at least six more months. In the meantime there are so many needs.
I have been fighting tears since yesterday morning. The heaviness in my chest was too much to handle tonight. I finally remembered about the Atonement and how it is always here for me to call on. I stopped what I was doing and said a prayer and ask Jesus to take my pain through His atonement. The pain immediately left and my burden was lightened.
I then told my Heavenly Father about my biggest stress- our finances- we live pretty frugally and when our kids have big activities they have to earn their own money, and not from us. They've worked hard for those things.
We have no money(-$600) in our bank right now and we are owing a house payment. I told Heavenly Father I needed the answer to hit me in the head. I was in no way in a mindset to understand a "quiet prompting". I also ask for Doug to be blessed to have strength, patience, ability to listen and act on promptings. I feel peace, hopefully it will continue but for now I know I have a Heavenly Father who loves me unconditionally and I have a Savior who has already felt everything we feel, we just have to let go of what we think we have "control"of and let atonement work.
Location:N 810 E,Smithfield,United States
Saturday, June 10, 2017
We have to start somewhere
For months I have been trying to get this blog going. I've been overwhelmed where to start, there is so much to say and no way to say it. Today, I decided to just start and I will start with my post I put on social media. Today feels like a hopeful day...
Twenty two years ago I made a decision, one of the most right decisions I've ever made- to marry the man who would carry me through more than I ever could have dreamed. The years have not been easy but when I look at this picture- one of my favorites ever! And see the "amazing" that has come from our union I can do nothing but be grateful for the man who has fought tooth and nail for me. It is because of him I am here. He never quits fighting for me or with me and holding his hand makes me truly believe we can conquer the world! Every day for twenty two years we've chosen each other and because of that my love for him is immeasurable. Doug, grow old with me, I have faith the best is yet to be, as long as you're with me. And what is the anniversary gift for 22 years? A new refrigerator of course!😂
Twenty two years seemed like forever when I was twenty.
Twenty two years feels like nothing and everything when I'm forty two.
*Ian and Mick at Grandma Marie Meikle's graveside service March 13, 2017
Twenty two years ago I made a decision, one of the most right decisions I've ever made- to marry the man who would carry me through more than I ever could have dreamed. The years have not been easy but when I look at this picture- one of my favorites ever! And see the "amazing" that has come from our union I can do nothing but be grateful for the man who has fought tooth and nail for me. It is because of him I am here. He never quits fighting for me or with me and holding his hand makes me truly believe we can conquer the world! Every day for twenty two years we've chosen each other and because of that my love for him is immeasurable. Doug, grow old with me, I have faith the best is yet to be, as long as you're with me. And what is the anniversary gift for 22 years? A new refrigerator of course!😂
Twenty two years seemed like forever when I was twenty.
Twenty two years feels like nothing and everything when I'm forty two.
*Ian and Mick at Grandma Marie Meikle's graveside service March 13, 2017
Saturday, March 26, 2016
Changes
One thing I've learned about MCAS is I never know what to expect. And the experience I have may be completely different than another person's even if we were on the exact same medicines. But, as hard as it is, I can't give up, I have to keep pushing on.
I've definitely had improvements, it has been a long time since I've had anaphylaxis. In fact, it was while I was in the hospital in Feb when I had my last one. I've been on a Chemo pill since about the end of January. I started at a 100 mg dose and have gradually moved up to starting the full dose today.
I think because I'm not going into anaphylaxis I'm noticing smaller reactions. The other day I was putting a frozen dinner, that my mom had made, into the crock pot, I ended up touching it as I put it in and I ended up swelling up and having a full reaction. That dinner looked so yummy but I didn't dare eat it because of what just touching it had done. I reacted to banana touching my hand, my whole are swelled along with my lips and tongue. I am constantly amazed at how this disease affects my body.
Being on the chemo has been hard on me. The diarrhea is constant and I feel nauseated most of the time. I don't eat much because almost all food makes me sick. Doug makes me yummy mashed potatoes often and I make smoothies, get them from Kneaders or my mom brings me them from McDonald's. Unfortunately, this is not enough to keep me properly hydrated, I try to drink but it's so hard to hold anything down. Because of dehydration I've had to go into the ER twice to get rehydrated. Luckily, I've got a new friend at home, I call him, Wilson,
the nurses are trying to teach me to access my port.
It's a good thing my neighbor, Melissa, has been willing to run over at a moment's notice to help me or else I'd have made a big mess of it. But her 18 years of nursing in home health are paying off for me!
The other side effect I've had has been the loss of hair. Now, this is suppose to be a rare side effect but I seem to like the rare. I've known that my hair was falling out but never enough that anyone would notice until one morning Doug found a big clump of it on the floor. When I showered that day I ran my hands through the top of it and the top came off.
This was frustrating but I thought that maybe my miracle hair worker could give me a nice comb over. Unfortunately the next day both sides of my hair fell out. I knew this was the end, it was time for the trusty clippers. I already had a hair appointment scheduled so I went to see Mindee and let her do the handiwork. I'll admit, this was emotional for me, I cried off and on for two days. I'm getting more used to it now and have pulled out my hats, friends have given me hats and I even figured out how to wrap a cute scarf on my head.
Just today my mother-in-law found a web-site with lots of cute hats and scarves. She let me spend some time shopping on it and she bought them for me. I'm anxiously waiting them to come! I've actually always loved hats so maybe this isn't such a terrible thing to be able to wear hats always. And I always have said; "It's just hair, it'll grow back." We just don't know how long it will be. In the meantime, I hope I don't freeze! Who knew hair kept a person so warm!
Katie and I decided that we would make a fun bonding activity out of it. We bought a henna kit and let her go to town on my head.
I think she did a great job! And it stayed on for about three weeks. Maybe there's a new career for Katie's future!
Our family has been the recipient of endless hours of service and countless prayers. We feel our burdens lightened because of them. We are so grateful.
Thursday, February 11, 2016
What MCAS looks like to me
This is such a rare disease, I know of 2 other people in the Valley who have it. Because it's so rare most people don't know how it affects people. Here is what MCAS looks like in my life.
*I have constant stomach/GI issues. Most foods don't taste good to me and many make me sick.
* I have almost constant deep bone pain with the majority of the pain in my hips and legs.
* Taking a hot shower completely wears me out. Once I take a shower I often have to sit on my bed for 15 minutes just to get the energy to get dressed.
* I sweat crazy amounts and at crazy times, usually there is no reason for it.
* I require a lot of sleep. On Sunday we spent the afternoon at my in-laws eating dinner and putting a puzzle together. The next day I slept until 10:00 then was asleep, for the night, by 4:30.
* I take medicine 7 times per day. This includes 20+ different medications, 4 inhalers and a nebulizer.
* Smells at anytime can send me into anaphylaxis and I never know when those smells can affect me. I love good smelling thing; perfume/cologne, scentsy, shampoos. I don't get to enjoy any of these anymore.
* Since the end of December I have spent 18 days in the hospital most of those in the icu with hallucinations.
* I can react to about anything including band aids and tape. The tape used after my surgery caused me to blister. The red lines in the picture below are actually tiny blisters.
* My emotions are all over the place, as a disease that depression and anxiety are organic to, or naturally comes along with the disease, I'm glad that these are under control as much as they are.
I'm sure there are lots of things I've forgotten. But these are what I'm thinking of right now. So, as we interact please be patient with me.
*I have constant stomach/GI issues. Most foods don't taste good to me and many make me sick.
* I have almost constant deep bone pain with the majority of the pain in my hips and legs.
* Taking a hot shower completely wears me out. Once I take a shower I often have to sit on my bed for 15 minutes just to get the energy to get dressed.
* I sweat crazy amounts and at crazy times, usually there is no reason for it.
* I require a lot of sleep. On Sunday we spent the afternoon at my in-laws eating dinner and putting a puzzle together. The next day I slept until 10:00 then was asleep, for the night, by 4:30.
* I take medicine 7 times per day. This includes 20+ different medications, 4 inhalers and a nebulizer.
* Smells at anytime can send me into anaphylaxis and I never know when those smells can affect me. I love good smelling thing; perfume/cologne, scentsy, shampoos. I don't get to enjoy any of these anymore.
* Since the end of December I have spent 18 days in the hospital most of those in the icu with hallucinations.
* I can react to about anything including band aids and tape. The tape used after my surgery caused me to blister. The red lines in the picture below are actually tiny blisters.
* My emotions are all over the place, as a disease that depression and anxiety are organic to, or naturally comes along with the disease, I'm glad that these are under control as much as they are.
I'm sure there are lots of things I've forgotten. But these are what I'm thinking of right now. So, as we interact please be patient with me.
Saturday, January 23, 2016
Playing Catch Up
This is me recently. I know it's pretty scary. And I didn't get here overnight.
In July I had my scope and biopsy on my small intestine to see if there was anything there causing me to go into anaphylaxis. I think this irritated my sphincter of Oddi so for about 2-3 months I dealt with that excruciating pain. The Dr in Indiana wouldn't touch me because of my breathing issues. They got the same Dr who did my scope to agree to do it. Everyone took it very seriously and made sure they did it in the safest way possible for my breathing. Everything came out fine except the Dr was not very kind when it was over- I hope I never have to see that Dr again.
My gut is feeling mostly better. The stomach issue I feel is related the the Mast Cell Activation Syndrome (MCAS) or Idiopathic Anaphylaxis. These are what I have officially been diagnosed with after dozens and dozens of blood and urine tests and two bone marrow biopsies.
I'm not sure I can remember the chronological order that things went but I will try to bring us up to date.
I have continued to go into anaphylaxis mostly caused by smells and stress and fatigue. I took off the months of October and November because my gut was so bad. I had the procedure the second week of November and thought for sure I would be ready to go back to work. I started back to my payroll job Dec 1 and did pretty well, with more limited hours. Until Dec 27 when I ended up in the hospital. I was able to spend my 41st birthday there. Holly walked into the room singing "crappy birthday to you". Boy, was that the truth!
I then returned to the icu the first week of January and spent 6 days in the icu and 6 days in the hospital. During this time they started me on a new medicine and it would make my symptoms worse for the first 3-12 days. So I spent about 8 days dealing with that and I couldn't go home until I'd had 24 hours without anaphylaxis.
During this time there were very few bright spots but here is a picture of a few of them- they'll get their own entry.
These cute little puppies were smuggled into me- with my Dr's permission. I have to admit they brought a lot of happiness with them.
The most recent "episode" was I had a Xolair shot and while waiting in the ER I passed out. They called a Code Blue and I got all of the medical floor nurses, Er dr and nurses. They even went as far as to put pads on me for shocking. I was taken straight to the er and after what seemed like only a very little time I was told I was being admitted to the icu. I was so surprised! But this was another three days in the icu being monitored. This is all very frustrating to me but I know that my Dr's are just fighting hard to keep me alive.
In July I had my scope and biopsy on my small intestine to see if there was anything there causing me to go into anaphylaxis. I think this irritated my sphincter of Oddi so for about 2-3 months I dealt with that excruciating pain. The Dr in Indiana wouldn't touch me because of my breathing issues. They got the same Dr who did my scope to agree to do it. Everyone took it very seriously and made sure they did it in the safest way possible for my breathing. Everything came out fine except the Dr was not very kind when it was over- I hope I never have to see that Dr again.
My gut is feeling mostly better. The stomach issue I feel is related the the Mast Cell Activation Syndrome (MCAS) or Idiopathic Anaphylaxis. These are what I have officially been diagnosed with after dozens and dozens of blood and urine tests and two bone marrow biopsies.
I'm not sure I can remember the chronological order that things went but I will try to bring us up to date.
I have continued to go into anaphylaxis mostly caused by smells and stress and fatigue. I took off the months of October and November because my gut was so bad. I had the procedure the second week of November and thought for sure I would be ready to go back to work. I started back to my payroll job Dec 1 and did pretty well, with more limited hours. Until Dec 27 when I ended up in the hospital. I was able to spend my 41st birthday there. Holly walked into the room singing "crappy birthday to you". Boy, was that the truth!
I then returned to the icu the first week of January and spent 6 days in the icu and 6 days in the hospital. During this time they started me on a new medicine and it would make my symptoms worse for the first 3-12 days. So I spent about 8 days dealing with that and I couldn't go home until I'd had 24 hours without anaphylaxis.
During this time there were very few bright spots but here is a picture of a few of them- they'll get their own entry.
These cute little puppies were smuggled into me- with my Dr's permission. I have to admit they brought a lot of happiness with them.
The most recent "episode" was I had a Xolair shot and while waiting in the ER I passed out. They called a Code Blue and I got all of the medical floor nurses, Er dr and nurses. They even went as far as to put pads on me for shocking. I was taken straight to the er and after what seemed like only a very little time I was told I was being admitted to the icu. I was so surprised! But this was another three days in the icu being monitored. This is all very frustrating to me but I know that my Dr's are just fighting hard to keep me alive.
Wednesday, August 19, 2015
Purpose
“Suffering is unbearable if you aren’t certain that God is for you and with you.”
This has been a really hard few weeks. My gut (sphincter of Oddi dysfunction) has started acting up again- I've already had to travel to Indiana twice in the last two years to have it repaired. The pain was so severe it landed me in the ER again. These times the Drs weren't very nice, actually they were quite judgmental. It has been a hard pill for me to swallow. Up until this time I have felt very taken care of and helped by the medical world. My faith and hope have been wavering.
I have a neighbor who is an ER Dr, the last month or so he has been trying to help me cope with some that this breathing issue is putting into my life. The truth of the matter is that there isn't really a lot to do right now and the breathing is VERY difficult due to the smoke (from neighboring state's wildfires) that has settled into our valley. He sent me a text this morning asking how my breathing was. I responded that it was worse (we had talked last night). His response was; "Ugh. I'm not sure what else to do. I'm hoping there is a purpose in all this... It's so hard for you"
I was feeling very hopeless this morning. There are so many reasons for those feelings. This is a hard, hard trial I am going through. It has been a hard, hard trial for quite some time now. It's hard on my kids and my husband and my mom and my sisters and my neighbors. I feel guilt for that. I thought on the purpose of this. I believe God has a purpose for what comes into our lives. I still don't know what this purpose is. Maybe I won't know until the next life what purpose this is serving but I know that I am growing. I wrote the following in my journal;
"Sometimes Heavenly Father sends helping hands when I think there is no more hope. Texts from a neighbor. Messages from friends. Phone calls from the Dr offices seeing if there is anything they can do to help today.
Sometimes simply knowing that I'm NOT ALONE is the best gift I can be given. Sometimes we need others to help pull us out of the depths of our winters."
This has been a really hard few weeks. My gut (sphincter of Oddi dysfunction) has started acting up again- I've already had to travel to Indiana twice in the last two years to have it repaired. The pain was so severe it landed me in the ER again. These times the Drs weren't very nice, actually they were quite judgmental. It has been a hard pill for me to swallow. Up until this time I have felt very taken care of and helped by the medical world. My faith and hope have been wavering.
I have a neighbor who is an ER Dr, the last month or so he has been trying to help me cope with some that this breathing issue is putting into my life. The truth of the matter is that there isn't really a lot to do right now and the breathing is VERY difficult due to the smoke (from neighboring state's wildfires) that has settled into our valley. He sent me a text this morning asking how my breathing was. I responded that it was worse (we had talked last night). His response was; "Ugh. I'm not sure what else to do. I'm hoping there is a purpose in all this... It's so hard for you"
I was feeling very hopeless this morning. There are so many reasons for those feelings. This is a hard, hard trial I am going through. It has been a hard, hard trial for quite some time now. It's hard on my kids and my husband and my mom and my sisters and my neighbors. I feel guilt for that. I thought on the purpose of this. I believe God has a purpose for what comes into our lives. I still don't know what this purpose is. Maybe I won't know until the next life what purpose this is serving but I know that I am growing. I wrote the following in my journal;
"Sometimes Heavenly Father sends helping hands when I think there is no more hope. Texts from a neighbor. Messages from friends. Phone calls from the Dr offices seeing if there is anything they can do to help today.
Sometimes simply knowing that I'm NOT ALONE is the best gift I can be given. Sometimes we need others to help pull us out of the depths of our winters."
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