Well, I've made it to Chicago and back. My husband, mom, oldest daughter and I all drove to Chicago on Thursday for the UMDF annual symposium. We returned today, Sunday. It was an excellent trip. We all had a great time.
However, I am exhausted. Not only was it a busy couple of days at the symposium but we also had a little excitement on the way home. There was a car accident right in front of us on the highway. Someone pulled a high speed u-turn from one side of the highway to the other right in front of another car. She had to quickly swerve to avoid hitting them, which put her and her boyfriend's car in a deep ditch at highway speeds.
Well, obviously I couldn't just let my mom keep driving, (not that she would have anyway) not knowing if they needed help or not. There were others that stopped to help, but I thought my emergency room nurse experience might come in handy. So, I stayed there on the roadside, helping them both until the medics got there. I was glad I did. I think I was able to help.
After being on the side of the road, getting up and down to check on both people in the 90 degree heat, I am going to need quite awhile to recover. That alone probably would have done me in for a few days. However, I was already struggling to get around after the symposium. BUT... it was all well worth it.
First of all, the symposium was awesome. It was so great to learn new things about my disease, but it was even better to get to talk to people going through the same thing. I have talked to a few people with mitochondrial disease online, but there's nothing like talking to people face to face who are going through, and have gone through, the things that I have.
There is also nothing else like knowing I was able to help someone. I absolutely loved my job. I loved being a nurse. I loved being an ER nurse. And I loved it because I loved helping people. I took pleasure everyday in knowing I was able to help someone, even if only in a small way. I don't know how much I was able to help the two people in the accident today with my nursing knowledge, but I know I was able to at least help in little ways. Such as calming her down, convincing her to go to the hospital, and reassuring her that her and her boyfriend were going to be okay.
After feeling so useless for so long, I don't care how shitty I'm going to feel for the next week. My heart and my head feel wonderful knowing that I did something good today.
Sunday, June 19, 2011
Friday, June 10, 2011
I think I need a break...
...from people. People have really been getting on my nerves recently. Nobody in particular. Well, I have a list of people who annoy me more than others. But that list has been longer recently.
You know... It's funny, because I just posted yesterday about priorities, how to live your life, etc. Now, today, I'm finding myself pissed off a lot. Actually, it's more like somewhere between annoyed and pissed off. That's not how I want to live my life. That's not what I would want to put in my guide. It would be something more like "don't sweat the small stuff" and other overly used cliches.
I do try my best to not get pissed off about the little, "no biggie", things. For some reason, however, I haven't had as much control over it recently.
I was in tears yesterday because of something a friend told me that I took way too personally. I was overly pissed today because someone didn't do what they said they were going to, or tell me they couldn't. It wasn't even anything important. I was terribly on edge when I was being pushed around a store in my wheelchair by daughter today. (I'm a bit of a control freak. I can't WAIT to get my electric wheelchair!)
Funny thing is, my 12 year old daughter, who talks non-stop didn't put me on edge near as much as normal. Seriously, she talks non-stop. I can just sit here, smile, and nod without responding any other way and she could carry on a 10 minute, or more, conversation with me. Of course, my 4 year old has her beat. She could probably go on for 30 minutes or more if we let her. Sometimes it's enough to drive the most patient person nuts. And that is NOT me!
Amazingly enough, they weren't bothering me near as much as the adults recently.
So, I'm thinking, I need to become a recluse for awhile. Just call me Nell.
You know... It's funny, because I just posted yesterday about priorities, how to live your life, etc. Now, today, I'm finding myself pissed off a lot. Actually, it's more like somewhere between annoyed and pissed off. That's not how I want to live my life. That's not what I would want to put in my guide. It would be something more like "don't sweat the small stuff" and other overly used cliches.
I do try my best to not get pissed off about the little, "no biggie", things. For some reason, however, I haven't had as much control over it recently.
I was in tears yesterday because of something a friend told me that I took way too personally. I was overly pissed today because someone didn't do what they said they were going to, or tell me they couldn't. It wasn't even anything important. I was terribly on edge when I was being pushed around a store in my wheelchair by daughter today. (I'm a bit of a control freak. I can't WAIT to get my electric wheelchair!)
Funny thing is, my 12 year old daughter, who talks non-stop didn't put me on edge near as much as normal. Seriously, she talks non-stop. I can just sit here, smile, and nod without responding any other way and she could carry on a 10 minute, or more, conversation with me. Of course, my 4 year old has her beat. She could probably go on for 30 minutes or more if we let her. Sometimes it's enough to drive the most patient person nuts. And that is NOT me!
Amazingly enough, they weren't bothering me near as much as the adults recently.
So, I'm thinking, I need to become a recluse for awhile. Just call me Nell.
Wednesday, June 8, 2011
How to live your life, a guide.
I had a rough day today. I generally do the day after I over-do it. I have felt bad both physically and emotionally. Of course, I tend to get emotional when I feel physically bad. Things just upset me easier, as you can imagine.
This evening, I was laying in bed, as I have been all day, and my husband came in and laid down next to me. I thought maybe he needed to talk to me about something because he doesn't usually slow down long enough to lay with me just to chat or spend time with me. However, I learned, over the course of the next hour, that that's exactly what he was doing. We looked at videos on YouTube, talked about our day, and he listened to me vent about things that are bothering me.
When he got up, he said "There's not enough time in the day. I had so many things I wanted to get done tonight." He then proceeded to name 3 or 4 things off that he had planned on working on around the house this evening. That is when I told him that he did something WAY more important than any of those things... he spent time with his wife. He said, "I know," and gave me a big smile.
I then had an impromptu chat with him about what we will remember about our lives when we're 80. Will he think back to our 30's and think "I didn't spend enough time getting things done around the house" if he spent time with me tonight? Or will he think "I didn't spend enough time with my wife" if he spent time cleaning the garage, mowing the yard, and getting a load of laundry done tonight? I just reminded him, and myself, what is more important in life.
Now that I know what is wrong with me and I am getting a monthly disability check, two things that consumed our minds and lives for the last year and a half, we need to re-evaluate what is important in our lives.
Thursday, May 26, 2011
It's a Wonderful Life
Good Morning all! I guess maybe I shouldn't say things like "good morning", "good evening", etc. since you could be reading this at any time of day. However, it's morning right now and I'm in a decent mood for a change so.... Good Morning!!!
I have not been feeling well since the fundraiser. My pain has been worse and I have been more fatigued and weak. My headaches are bothering me a lot more recently as well. That is caused by both the POTS and the mito. In POTS, they call it coat hanger pain, because it feels like someone is sticking the end of a wire hanger in the back of my head. Okay, not really. It's because the pain forms a coat hanger shape in the back of the head, shoulders, and upper back. One of my favorite POTSy bloggers said recently that maybe she's being punished by mommie dearest for using wire hangers. I second that! I am this close (I'm holding my thumb and finger about 1/2 inch apart. Trust me. I am. I swear! Okay, you got me. I didn't really do it. But you get the point) to taking all of the wire hangers out of my house, just to see if it'll make me feel better.
Since I don't have enough health problems, I decided to develop another one. You know, I don't have enough excitement in my life. (My eyes hurt from rolling them right now) This one is a little bit more personal. However, what the hell do I have to hide? I won't go into details. I promise. I have developed uterine prolapse and rectocele; or pelvic prolapse. They call it pelvic prolapse because usually more than one organ falls. Pelvic prolapse is when the muscles in the pelvis are weak for one reason or another. It usually occurs after menopause because the lack of estrogen in the body causes the muscles to weaken. Sometimes it can be caused by surgery or child birth. However, in my case, it was caused by the weakening of my muscles due to mitochondrial disease.
Here is a link to information about pelvic organ prolapse...
emedicinehealth
There are different stages of prolapse from 1 through 4. My rectocele is a 4 and uterine prolapse is a 2. The ultimate solution is surgery. Especially since mine is at an advanced stage. However, since I am a very high risk surgical candidate, that is not much of an option for me. If it was life threatening, or could be if I didn't have surgery, then, obviously, I would have the surgery. But, it's not. So, instead, I just get to deal with it. I am going to try pelvic floor physical therapy, but if that doesn't work, then I just have to live with my parts falling out. Fun!!!
On another, more pleasant, note, I have ordered my chair. A guy came a couple of weeks ago and brought a two chairs for me to test drive. However, I only tried one. I had already talked to him on the phone about a chair I found online. I had asked him if he recommended any other chairs because I had just done a little research and he knows all about different types of chairs. He said that the one I picked would be a great fit for me. It turns out that it was. I loved it.
I can't wait to use it! It'll be SO great to be able to be independent when I go places instead of relying on someone else to push me in my manual wheelchair. Here's a picture of it and a link to more information about the wheelchair.
Permobil - C300 Wheelchair
Unfortunately, it'll take 6 to 8 weeks to get it. So, once again, I'm counting down the days for something I'm waiting for. However, this time it's for something good; not a doctor's appointment or something.
Because the sale was so successful, we have raised enough money to go to the UMDF symposium in Chicago. My husband, mom, oldest daughter, and I are all going. We will be driving there as it's only an 8 hour drive. We will be driving up there on Thursday and back on Sunday. Unfortunately, I will not have my chair by then. I should be able to rent a scooter, however. I am really looking forward to it. I really want to learn as much as possible about this disease as well as talk to other people dealing with it on a day to day basis.
Well, I have more to say. Don't I always? You know, I always wonder why my two daughters never stop talking. Hmmmmm.... You think maybe they got it from me? So, like I was saying... I have more to say, but I'm getting tired. I will talk about the other things next time.
Much Love!!!
Robin
I have not been feeling well since the fundraiser. My pain has been worse and I have been more fatigued and weak. My headaches are bothering me a lot more recently as well. That is caused by both the POTS and the mito. In POTS, they call it coat hanger pain, because it feels like someone is sticking the end of a wire hanger in the back of my head. Okay, not really. It's because the pain forms a coat hanger shape in the back of the head, shoulders, and upper back. One of my favorite POTSy bloggers said recently that maybe she's being punished by mommie dearest for using wire hangers. I second that! I am this close (I'm holding my thumb and finger about 1/2 inch apart. Trust me. I am. I swear! Okay, you got me. I didn't really do it. But you get the point) to taking all of the wire hangers out of my house, just to see if it'll make me feel better.
 |
| NO wire hangers... EVER!!!! |
Here is a link to information about pelvic organ prolapse...
emedicinehealth
On another, more pleasant, note, I have ordered my chair. A guy came a couple of weeks ago and brought a two chairs for me to test drive. However, I only tried one. I had already talked to him on the phone about a chair I found online. I had asked him if he recommended any other chairs because I had just done a little research and he knows all about different types of chairs. He said that the one I picked would be a great fit for me. It turns out that it was. I loved it.
Permobil - C300 Wheelchair
Unfortunately, it'll take 6 to 8 weeks to get it. So, once again, I'm counting down the days for something I'm waiting for. However, this time it's for something good; not a doctor's appointment or something.
Because the sale was so successful, we have raised enough money to go to the UMDF symposium in Chicago. My husband, mom, oldest daughter, and I are all going. We will be driving there as it's only an 8 hour drive. We will be driving up there on Thursday and back on Sunday. Unfortunately, I will not have my chair by then. I should be able to rent a scooter, however. I am really looking forward to it. I really want to learn as much as possible about this disease as well as talk to other people dealing with it on a day to day basis.
Well, I have more to say. Don't I always? You know, I always wonder why my two daughters never stop talking. Hmmmmm.... You think maybe they got it from me? So, like I was saying... I have more to say, but I'm getting tired. I will talk about the other things next time.
Much Love!!!
Robin
Tuesday, May 10, 2011
Success! and other thoughts about fundraisers
First off, I want to apologize for the delay in posting. I know a lot of people are wanting to know how the Garage and Bake Sale went. Amazingly, I have been pretty busy since the sale. Busy, that is, in mito terms. In other words, I have been using my spoons on other things and have not had any left over to post on my blog.
So, to answer everyone's question... The sale was a huge success!!! I am so happy. We reached AND exceeded our goal. We will have enough money for the chair I want as well as our trip to Chicago for the United Mitochondrial Disease Foundation symposium in June.
We had a great turnout for the sale. The weather was wonderful. As my husband has pointed out, we haven't had 3 great weather days this spring yet, let alone 3 in a row. It was not to hot, not too cold, and we didn't have a lick of rain. I am so thankful for that as I'm sure it really helped with our great turnout. I also received multiple donations via this website, check, and cash. We made over $2K at the sale alone!!!!
I could not have done it without all of your help! I am SO thankful for everyone who donated. That includes everyone who donated money, baked goods, stuff to sell in the garage sale, and their time to help with the sale. We had so much stuff to sell in the sale that we could barely find a place to put everything. We had LOTS of clothes, furniture, home decor, tons of toys, 5 lawnmowers (which all sold, thanks to my hubby), electronics, and a bunch of brand new items as well. In addition to that, we had lots of yummy baked goods that sold fast! We had sold them all by Saturday morning. We also had a lot of great people who helped with the sale. My oldest daughter, Kylie, even stayed home from school on Thursday to help, and she was a HUGE help. I was so proud of how hard she worked. We could not have done it without everyone's help!
THANK YOU!!!!
Something that has been on my mind a lot, and has completely amazed me, is who has helped and who hasn't. There are so many people that I have never met or only met once or twice who helped. I was so amazed that some of my friends from my past came out of the woodwork to help. A short story... I was resting in the house for awhile during the sale (as I had to do quite often). My good friend, who was helping run the sale, came in and told me that my friend, Cory, was there. My response was, "I don't have a friend named Cory". My husband then came in and told me his last name and I was completely shocked! Cory is an old friend of mine who I haven't seen since high school or maybe a year after. That was 14 years ago! He was on leave from the military and made it a point to come out to the sale to see me and make a donation. That was so awesome. The wife of another good friend from high school also did a lot to help. She posted the flyer at her company (which is large), drove 30 minutes one day to donate baked goods, and then drove out again 2 days later to buy some stuff at the sale as well as make a monetary donation. There is another story of someone helping out in a huge way that I would love to tell you, but I can't. But I will just say, I was speechless.
I don't even have the right words to say how lucky I am, how good I feel, how happy I am, etc. because of everyone's generosity. I do not deserve all of this! There are so many people out there who need help. I am so grateful.
As much as I hate to go to something negative now, I'm going to. After all, this is the place I go to vent. So I wouldn't be me if I didn't also post my negative feelings as well as my positive ones. We all know I'm not the overly positive "Polly Anna" type. (Hi, Staci!) As I was totally amazed at all of the generous help, I was also amazed at the lack of help from some. It has shocked me that people who I've never met could do so much, when some family and friends don't help at all. It's just interesting to me. When going through tough times, isn't it family and friends who are supposed to be there more than anyone? I am learning that that's not always the case. There are some family members and friends who didn't do anything. That hurt. But, you know, it's a learning experience.
Now, don't get me wrong. The good SOOOO outweighs the bad. I allowed myself to be upset for a few hours one night. Then, I was done. Yes, it's still in the back of my mind (obviously, or I wouldn't be posting it). However, I am NOT letting it get me down. I know who my true friends are. I know which family members to rely on when I need someone.
So, to those of you who helped make the sale a huge success, I will say it again. THANK YOU SO MUCH!!! Words can not express how grateful I am.
Much love!
So, to answer everyone's question... The sale was a huge success!!! I am so happy. We reached AND exceeded our goal. We will have enough money for the chair I want as well as our trip to Chicago for the United Mitochondrial Disease Foundation symposium in June.
We had a great turnout for the sale. The weather was wonderful. As my husband has pointed out, we haven't had 3 great weather days this spring yet, let alone 3 in a row. It was not to hot, not too cold, and we didn't have a lick of rain. I am so thankful for that as I'm sure it really helped with our great turnout. I also received multiple donations via this website, check, and cash. We made over $2K at the sale alone!!!!
I could not have done it without all of your help! I am SO thankful for everyone who donated. That includes everyone who donated money, baked goods, stuff to sell in the garage sale, and their time to help with the sale. We had so much stuff to sell in the sale that we could barely find a place to put everything. We had LOTS of clothes, furniture, home decor, tons of toys, 5 lawnmowers (which all sold, thanks to my hubby), electronics, and a bunch of brand new items as well. In addition to that, we had lots of yummy baked goods that sold fast! We had sold them all by Saturday morning. We also had a lot of great people who helped with the sale. My oldest daughter, Kylie, even stayed home from school on Thursday to help, and she was a HUGE help. I was so proud of how hard she worked. We could not have done it without everyone's help!
THANK YOU!!!!
Something that has been on my mind a lot, and has completely amazed me, is who has helped and who hasn't. There are so many people that I have never met or only met once or twice who helped. I was so amazed that some of my friends from my past came out of the woodwork to help. A short story... I was resting in the house for awhile during the sale (as I had to do quite often). My good friend, who was helping run the sale, came in and told me that my friend, Cory, was there. My response was, "I don't have a friend named Cory". My husband then came in and told me his last name and I was completely shocked! Cory is an old friend of mine who I haven't seen since high school or maybe a year after. That was 14 years ago! He was on leave from the military and made it a point to come out to the sale to see me and make a donation. That was so awesome. The wife of another good friend from high school also did a lot to help. She posted the flyer at her company (which is large), drove 30 minutes one day to donate baked goods, and then drove out again 2 days later to buy some stuff at the sale as well as make a monetary donation. There is another story of someone helping out in a huge way that I would love to tell you, but I can't. But I will just say, I was speechless.
I don't even have the right words to say how lucky I am, how good I feel, how happy I am, etc. because of everyone's generosity. I do not deserve all of this! There are so many people out there who need help. I am so grateful.
As much as I hate to go to something negative now, I'm going to. After all, this is the place I go to vent. So I wouldn't be me if I didn't also post my negative feelings as well as my positive ones. We all know I'm not the overly positive "Polly Anna" type. (Hi, Staci!) As I was totally amazed at all of the generous help, I was also amazed at the lack of help from some. It has shocked me that people who I've never met could do so much, when some family and friends don't help at all. It's just interesting to me. When going through tough times, isn't it family and friends who are supposed to be there more than anyone? I am learning that that's not always the case. There are some family members and friends who didn't do anything. That hurt. But, you know, it's a learning experience.
Now, don't get me wrong. The good SOOOO outweighs the bad. I allowed myself to be upset for a few hours one night. Then, I was done. Yes, it's still in the back of my mind (obviously, or I wouldn't be posting it). However, I am NOT letting it get me down. I know who my true friends are. I know which family members to rely on when I need someone.
So, to those of you who helped make the sale a huge success, I will say it again. THANK YOU SO MUCH!!! Words can not express how grateful I am.
Much love!
Monday, April 18, 2011
Garage and Bake Sale
As I'm sure many of you have noticed, I have made a few changes to the website. One of the changes you will see above. I have created multiple pages on my website. Please browse around and take a look. It is still a work in progress.
Another, very important thing I would like to point out, is that I am holding a fundraiser. On April 28th, 29th, and 30th, I am having a combination garage and bake sale. I have decided to do this to help with the cost of a power wheelchair and a lift in order to put the chair in our SUV. I am also trying to plan a trip to Chicago for the umdf (united mitochondrial disease foundation) symposium. I will discuss this further below.
Now that I have a diagnosis and have grieved over such diagnosis, I am ready to move on. In order to do so, I need to make some changes in my life. I need to make these changes to accommodate the new, mito, me. The new, mito me needs a wheelchair in order to "walk" long distances. I would love to be able to go to more of my daughters' soccer games, go on walks with them like I used to, and do other things that I haven't been able to do because it requires too much walking. Of course, too much walking is anything longer than 50 to 100 feet, and that's on a good day. My husband has taken the girls to many outings in which I had to stay home.
I also want to be more independent. I am such an independent person as it is, so this last year and a half has been a real struggle. I absolutely HATE having to rely on others for things. Someone in the family is letting me use a standard wheelchair that they had just sitting around. However, I don't have the energy in my legs or my arms. So, in order to use that chair, someone has to push me. I want to be able to get around on my own. For instance, my husband, the girls and I went to Powell Gardens (a place where you can walk and admire lakes, ponds, statues, and lots of flowers). We borrowed a wheelchair from there. However, someone was having to push me while also keeping an eye on our two kids. Luckily, grandma went with us which was a big help. Unfortunately though, we can't drag grandma to all of our family outings so that we have an extra pair of hands. I can't wait to return to Powell Gardens and drive myself around while the hubby takes care of the kids.
As I mentioned above, I am planning a trip to Chicago for the UMDF mitochondrial disease symposium. My mom, my husband, and I are all planning on attending. And because she has begged me to go to Mayo in March of '09 and Atlanta in December and March of this year, we are going to try to take my 12 year old daughter as well. This is an event that is held every year for physicians and researchers wanting to share their knowledge and recent findings about mitochondrial disease with others. It is also a place where people with mitochondrial disease, or caretakers of those people, can meet with others going through the same thing. There will be an opportunity to meet with mitochondrial disease specialists one on one, as well as a group panel called "Ask the mito doc." There will be a networking room for people to connect with others in their area dealing with living life with mitochondrial disease. The cost of the symposium is $400 for my husband and I. There will, of course, be the costs of the trip itself: gas, hotel, food, etc.
Here are a couple of links with information about the symposium, in case you're interested....
Symposium home page
What to expect at the symposium
I would really like to attend this symposium in order to meet others dealing with this disease as well as talk to specialists who know more than the doctors I've seen up to this point. Of course, that wouldn't take much since most of my docs are completely clueless about it all. For that reason, the money raised above and beyond the cost of a wheelchair will go toward the costs of the trip to Chicago to learn more about mitochondrial disease.
Please click on the section at the top of the screen that says "How you can help. Garage/bake sale info" for more information about the sale.
Another, very important thing I would like to point out, is that I am holding a fundraiser. On April 28th, 29th, and 30th, I am having a combination garage and bake sale. I have decided to do this to help with the cost of a power wheelchair and a lift in order to put the chair in our SUV. I am also trying to plan a trip to Chicago for the umdf (united mitochondrial disease foundation) symposium. I will discuss this further below.
Now that I have a diagnosis and have grieved over such diagnosis, I am ready to move on. In order to do so, I need to make some changes in my life. I need to make these changes to accommodate the new, mito, me. The new, mito me needs a wheelchair in order to "walk" long distances. I would love to be able to go to more of my daughters' soccer games, go on walks with them like I used to, and do other things that I haven't been able to do because it requires too much walking. Of course, too much walking is anything longer than 50 to 100 feet, and that's on a good day. My husband has taken the girls to many outings in which I had to stay home.
I also want to be more independent. I am such an independent person as it is, so this last year and a half has been a real struggle. I absolutely HATE having to rely on others for things. Someone in the family is letting me use a standard wheelchair that they had just sitting around. However, I don't have the energy in my legs or my arms. So, in order to use that chair, someone has to push me. I want to be able to get around on my own. For instance, my husband, the girls and I went to Powell Gardens (a place where you can walk and admire lakes, ponds, statues, and lots of flowers). We borrowed a wheelchair from there. However, someone was having to push me while also keeping an eye on our two kids. Luckily, grandma went with us which was a big help. Unfortunately though, we can't drag grandma to all of our family outings so that we have an extra pair of hands. I can't wait to return to Powell Gardens and drive myself around while the hubby takes care of the kids.
As I mentioned above, I am planning a trip to Chicago for the UMDF mitochondrial disease symposium. My mom, my husband, and I are all planning on attending. And because she has begged me to go to Mayo in March of '09 and Atlanta in December and March of this year, we are going to try to take my 12 year old daughter as well. This is an event that is held every year for physicians and researchers wanting to share their knowledge and recent findings about mitochondrial disease with others. It is also a place where people with mitochondrial disease, or caretakers of those people, can meet with others going through the same thing. There will be an opportunity to meet with mitochondrial disease specialists one on one, as well as a group panel called "Ask the mito doc." There will be a networking room for people to connect with others in their area dealing with living life with mitochondrial disease. The cost of the symposium is $400 for my husband and I. There will, of course, be the costs of the trip itself: gas, hotel, food, etc.
Here are a couple of links with information about the symposium, in case you're interested....
Symposium home page
What to expect at the symposium
I would really like to attend this symposium in order to meet others dealing with this disease as well as talk to specialists who know more than the doctors I've seen up to this point. Of course, that wouldn't take much since most of my docs are completely clueless about it all. For that reason, the money raised above and beyond the cost of a wheelchair will go toward the costs of the trip to Chicago to learn more about mitochondrial disease.
Please click on the section at the top of the screen that says "How you can help. Garage/bake sale info" for more information about the sale.
Sunday, April 10, 2011
Moving on
Well, it's been awhile since I've posted. In case you're wondering, I'm still alive. I didn't go jump off a cliff after my last overly depressing post. In fact, I am doing much better.
Today I got some excellent news for a change. It's been awhile since I've known what really good news feels like. Granted, I was relieved when I finally got a diagnosis. However, that may have taken a huge weight off of my shoulders, but it was far from good news. So did you want to know what the good news is? I didn't think so.
But I'll tell you anyway, because I want to. This morning my husband came in and woke me up at 7am. For the old Robin, that was not early. However, for the mito Robin, who doesn't sleep well and usually doesn't fall asleep until 12 or 1am, that's very early. BUT... I was okay with it because he woke me up to tell me that I had a large amount of money deposited in my account yesterday!
I was approved for social security disability income (ssdi)!!!!!!!!!!!!! Hale-fucking-lejah! That's my version of the religious song "Hallelujah".
So not only does this news lift a HUGE weight off of mine and my husband's shoulders, but it is excellent news. And, to make it even better, they paid me back pay. That's why there was a large deposit made to my account. (I had given them my info so I could use direct deposit if I was approved.) Since ssdi is still no where near what I was making prior to becoming sick, the back pay will help us tremendously with whatever bills we still need to pay after my husband's paycheck and ssdi.
I am so freaking happy! I think I deserve to celebrate. What do you think? I think that I deserve a massage. Sound good? Yeah, that's what I thought.
I would think that that would be all the good that will come to us for a year or more. (I hate using two of the same word right next to each other in a sentence. It looks funny, but it's right.) However, I was actually happy about something else yesterday. I know, right? Two things to be happy about in two days! It's just not possible! You would think so, at least, based on my recent history.
In order to tell you the other good thing, though, I will have to start with the typical bad. Sorry, just bear with me (or, if you're my husband reading this, then bare with me). Anyway... My pain has been unbearable (there's that word again) over the last week. I don't know what triggered it, but I have been having excruciatingly sharp pains in my left leg and right chest. I called my pain management doctor to make an appt. They couldn't get me in for 2 weeks! That would be fine if I was just going in for my standard appointment, but I needed to get in quickly because nothing I was doing was helping my pain.
I decided to call someone else. My mom recommended someone to me and I got in within 2 days of calling to make the appointment. So that's part of the good news. When I went in to my appointment on Wednesday, I was overwhelmingly pleased. This doctor actually knows what mitochondrial disease is! And not just from learning about it in medical school in 1918. He has actually done a study, or presentation, or something on the effects of Propofol in patients with mitochondrial disease. Not only is he knowledgeable, but he's kind as well. Double bonus! He changed my pain medication to something sustained release (slowly released into the blood stream over time), in addition to something for breakthrough pain. He is going to start me on a different medication to help me with my myoclonic twitches as well (muscle jerking/twitching). Those have been really bothering me, especially at night when I can't sleep because of them. And instead of throwing a prescription at me and saying "come back in 3 months", he discussed many different options for almost an hour and told me to come back in 2 weeks so he can assess how I'm doing with the new medications and change something if need be. After being in excruciating pain for the last week or more (I've had a lot of pain for a long time, but this last week has been awful), I'm so happy to have hope that someone is going to help me get it under control.
You might notice some things on my blog changing over the upcoming days/weeks. I am currently working on a few changes. I am adding some additional pages for more information about what mitochondrial disease is, how you can help, and others. They are currently under construction, but please visit those other pages on occasion as I will be updating them soon.
I will also be getting back to you all soon as I am in the beginning stages of organizing a fundraiser. I would love your help! More information coming soon.
Spring is here! Get outside! I have. :o)
Today I got some excellent news for a change. It's been awhile since I've known what really good news feels like. Granted, I was relieved when I finally got a diagnosis. However, that may have taken a huge weight off of my shoulders, but it was far from good news. So did you want to know what the good news is? I didn't think so.
But I'll tell you anyway, because I want to. This morning my husband came in and woke me up at 7am. For the old Robin, that was not early. However, for the mito Robin, who doesn't sleep well and usually doesn't fall asleep until 12 or 1am, that's very early. BUT... I was okay with it because he woke me up to tell me that I had a large amount of money deposited in my account yesterday!
I was approved for social security disability income (ssdi)!!!!!!!!!!!!! Hale-fucking-lejah! That's my version of the religious song "Hallelujah".
So not only does this news lift a HUGE weight off of mine and my husband's shoulders, but it is excellent news. And, to make it even better, they paid me back pay. That's why there was a large deposit made to my account. (I had given them my info so I could use direct deposit if I was approved.) Since ssdi is still no where near what I was making prior to becoming sick, the back pay will help us tremendously with whatever bills we still need to pay after my husband's paycheck and ssdi.
I am so freaking happy! I think I deserve to celebrate. What do you think? I think that I deserve a massage. Sound good? Yeah, that's what I thought.
I would think that that would be all the good that will come to us for a year or more. (I hate using two of the same word right next to each other in a sentence. It looks funny, but it's right.) However, I was actually happy about something else yesterday. I know, right? Two things to be happy about in two days! It's just not possible! You would think so, at least, based on my recent history.
In order to tell you the other good thing, though, I will have to start with the typical bad. Sorry, just bear with me (or, if you're my husband reading this, then bare with me). Anyway... My pain has been unbearable (there's that word again) over the last week. I don't know what triggered it, but I have been having excruciatingly sharp pains in my left leg and right chest. I called my pain management doctor to make an appt. They couldn't get me in for 2 weeks! That would be fine if I was just going in for my standard appointment, but I needed to get in quickly because nothing I was doing was helping my pain.
I decided to call someone else. My mom recommended someone to me and I got in within 2 days of calling to make the appointment. So that's part of the good news. When I went in to my appointment on Wednesday, I was overwhelmingly pleased. This doctor actually knows what mitochondrial disease is! And not just from learning about it in medical school in 1918. He has actually done a study, or presentation, or something on the effects of Propofol in patients with mitochondrial disease. Not only is he knowledgeable, but he's kind as well. Double bonus! He changed my pain medication to something sustained release (slowly released into the blood stream over time), in addition to something for breakthrough pain. He is going to start me on a different medication to help me with my myoclonic twitches as well (muscle jerking/twitching). Those have been really bothering me, especially at night when I can't sleep because of them. And instead of throwing a prescription at me and saying "come back in 3 months", he discussed many different options for almost an hour and told me to come back in 2 weeks so he can assess how I'm doing with the new medications and change something if need be. After being in excruciating pain for the last week or more (I've had a lot of pain for a long time, but this last week has been awful), I'm so happy to have hope that someone is going to help me get it under control.
You might notice some things on my blog changing over the upcoming days/weeks. I am currently working on a few changes. I am adding some additional pages for more information about what mitochondrial disease is, how you can help, and others. They are currently under construction, but please visit those other pages on occasion as I will be updating them soon.
I will also be getting back to you all soon as I am in the beginning stages of organizing a fundraiser. I would love your help! More information coming soon.
Spring is here! Get outside! I have. :o)
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