As we enter in the holiday season ( and hell months for musicians) I just wanted to update.
Still here with my mom, God Bless her. I would really like to find out own apartment soon. ( Income tax time!)
I still have no doctor. Which is not good, I have been awful lately and it's not good at all
Hubby has a job and I do too but it dosen't help ( So happy for him though)
Still I am trying to enjoy life and the holidays
Tuesday, November 19, 2013
Wednesday, August 14, 2013
Coping
Many people ask me "How do you cope with the pain you feel daily without meds?"
My answer is normally, " I kinda just do" Which isn't un true I use my self disicipline to get me through a lot of my days. A lot of the time I am working and dealing with people so I am unable to take anything that is going to make me sleepy or knock me out.
3.
Here are some of the things I do:
1. Stay in constant communication with my support group. When I say constant communication I am not joking, at any giving time I can post on that page how I am feeling and will have responses in seconds my friends there help me breathe and get through the rough patch, I also have many members phone numbers so if all else fails they are a call or text away. ( I Love Fibro Heroes!!!!!)
2. Breathing works. Yes its true taking a few deep breathes when the pain is very intense dosent make it go away but it helps me relax
3. Remember my stress/ pain management skills from counseling, this is why I went to counseling to begin with so that I can manage this without meds.
4. Hang out with my Thearpy Cats Lilla and Skye. Yes, I legitimately have two wonderful kitties that help me during a flare and provide me with emotional comfort.
Lilla is certified and Skye is in training. I trained Lilla myself and boy dose my baby girl know when mommy needs her. Her and her baby sister Skye hang with me all day sometimes before they go and do cat things lol.
5. reach out to family and friends they get it and will talk to me to take my mind off of pain.
6. Music therapy ( I am certified in this so it works for me as my own patient :) )
So its a lot and honestly it dosen't always work, I break down and take something, and honesly now I've had to come to terms with the fact that its OK for me to do that sometime! I am not crazy nor do I always have to be strong about pain.
Its been about a year and a half since my diagnosis and I am doing OK. The main thing now is to get my depression under control once I do that I will feel better about myself and even more ready to conquer the world.
My answer is normally, " I kinda just do" Which isn't un true I use my self disicipline to get me through a lot of my days. A lot of the time I am working and dealing with people so I am unable to take anything that is going to make me sleepy or knock me out.
3.
Here are some of the things I do:
1. Stay in constant communication with my support group. When I say constant communication I am not joking, at any giving time I can post on that page how I am feeling and will have responses in seconds my friends there help me breathe and get through the rough patch, I also have many members phone numbers so if all else fails they are a call or text away. ( I Love Fibro Heroes!!!!!)
2. Breathing works. Yes its true taking a few deep breathes when the pain is very intense dosent make it go away but it helps me relax
3. Remember my stress/ pain management skills from counseling, this is why I went to counseling to begin with so that I can manage this without meds.
4. Hang out with my Thearpy Cats Lilla and Skye. Yes, I legitimately have two wonderful kitties that help me during a flare and provide me with emotional comfort.
5. reach out to family and friends they get it and will talk to me to take my mind off of pain.
6. Music therapy ( I am certified in this so it works for me as my own patient :) )
So its a lot and honestly it dosen't always work, I break down and take something, and honesly now I've had to come to terms with the fact that its OK for me to do that sometime! I am not crazy nor do I always have to be strong about pain.
Its been about a year and a half since my diagnosis and I am doing OK. The main thing now is to get my depression under control once I do that I will feel better about myself and even more ready to conquer the world.
Saturday, August 10, 2013
How Fibro Hero's saved my life.
When I was first diagnosed with fibro, I did what I think anyone would do in my situation. I did my research on the condition and sought out others dealing with the same issues. There was no physical support group in my area for fibromyalgia so I turned to the next best thing social media. I typed in "Fibromyalgia" and of course TONS of groups popped up. So I just joined the main group with the highest number of people in it.
In that general group I came across so much hatred towards others, "Cure all treatments", and generally very nastiness. It did provide me with information but the support towards others ( what fibro patients need wasn't there at all) It was to the point were I got sick of looking on that page, because it was too much freaking DRAMA from everyone. So I left, I wasn't adding to the stress I was already under for the sake of trying to find information and out of 1000 members maybe only meet like 3 decent people.
A few months went by and one day I got a "Friend request" from "Fibro Heroes" I was like hmmmmm ok so I checked out the group and basically it was another fibro suffer who had also had horrible experiences on the same page I had left, she wanted to start her own group that did what we needed to do, support each other without the BS and Drama.
I remember the group starting off at about 30 members but we were all super super close to each other, we would all check in at least daily and bonds were created quick with one another, it became an addiction, Every day I was on that group checking making sure everyone was OK and posting about my life as well. The group grew not only with members that were suffering from fibro but their personal supporters as well, My husband saw that I was "happy" in the group and joined too in support of me and all of the other heroes pretty soon we were excited to hit 100 members and still gave nothing but support of each other.
Today Fibro heroes has been on FB for a little over a year now and we have grown a lot in membership, it has truly been a blessing to not only connect with others with fibro but to send others in that direction to get more support. This group has become an extended family and they have been with me through my darkest times, in fact, they know more about those darker times than anyone else does in my life, because they "Get it". Without them supporting me, honestly I can't say where I would be mentally right now. The group saved my life and continues to effect the way that I deal with fibro. All 200+ members are all my heroes and I love them dearly
:)
In that general group I came across so much hatred towards others, "Cure all treatments", and generally very nastiness. It did provide me with information but the support towards others ( what fibro patients need wasn't there at all) It was to the point were I got sick of looking on that page, because it was too much freaking DRAMA from everyone. So I left, I wasn't adding to the stress I was already under for the sake of trying to find information and out of 1000 members maybe only meet like 3 decent people.
A few months went by and one day I got a "Friend request" from "Fibro Heroes" I was like hmmmmm ok so I checked out the group and basically it was another fibro suffer who had also had horrible experiences on the same page I had left, she wanted to start her own group that did what we needed to do, support each other without the BS and Drama.
I remember the group starting off at about 30 members but we were all super super close to each other, we would all check in at least daily and bonds were created quick with one another, it became an addiction, Every day I was on that group checking making sure everyone was OK and posting about my life as well. The group grew not only with members that were suffering from fibro but their personal supporters as well, My husband saw that I was "happy" in the group and joined too in support of me and all of the other heroes pretty soon we were excited to hit 100 members and still gave nothing but support of each other.
Today Fibro heroes has been on FB for a little over a year now and we have grown a lot in membership, it has truly been a blessing to not only connect with others with fibro but to send others in that direction to get more support. This group has become an extended family and they have been with me through my darkest times, in fact, they know more about those darker times than anyone else does in my life, because they "Get it". Without them supporting me, honestly I can't say where I would be mentally right now. The group saved my life and continues to effect the way that I deal with fibro. All 200+ members are all my heroes and I love them dearly
:)
Sunday, August 4, 2013
New journey
The last time I posted in March I was going through a very rough patch in life. Well Its now August, and although that patch has gotten a little smoother it's still bumpy and very much under construction.
So much has changed from March to now. I scared myself back in April when I started have thoughts of suicide again. I didn't act on them of course, but the thoughts were there and they were very intense. Intense enough for me to scare myself and promptly seek help from my psychiatrist/ family doc and my psychologist With adjustment of medications and a lot of talking, I was finally able to push though those thoughts and get back to "normal".
My relationship with my husband has improved although I am still trying to get him to open up to me and for us to communicate more, it hasn't been to the point where I want to end the relationship ( It had been to that point, a few months ago but we pushed through it) My marriage vows are scared to me and they are promises I made to God myself and my husband, I don't break my promises. Through everything I vowed to be there and so here I am, he is there for me too, through everything and let's face it, I can be a horrible person to live with these days stress and pain do some really really weird things to my mood.
One of the biggest changes in my life at the moment is the fact that after two years of being stuck in one role that I was miserable in, I FINALLY was able to quit my job at Amazon. I didn't quit because of the company or my co-workers. I quit because I am now a doctoral student, and quite frankly Amazon wasn't using all of my potential ( there is so much I could have done there if I had been given the chance) and I was just unhappy being stagnant in the role I was in, so I found a new job and quit effective July 19th. My new job is starting a community choir back "home" so we are now in the process of moving. I am moving in with my mom for a while so that we can find work and I can get this choir up and running. I am not sure how long we are going to be there but its something I am passionate about and will be happy.
With the move comes other challenges like right now, we have no money, no insurance, and did I mention we lost our Family doctor ( she is only going to be seeing pysch patients now and not doing family medicine) We were heartbroken and realized that with this move we'd have to find new doctors anyway so it works out but it's sad none the less.
Currently my mood is pretty down, I can't seem to make myself happy no matter what, I am not sure if it is because I am currently not taking any medicine for my fibro and depression or if I am just really nervous about the future but I can't break this funk. Its been MONTHS in this funk, and every time I think I am making a good decision I always either regret it or second guess myself. IDK prayers are needed.
We are still trying to have a baby, I think that is another cause of my depression and stress, I found out that I have poly cystic ovarian syndrome and my hormones are so out of wack. I don't ovulate. After two months of taking fertility drugs on my end and still haven't even ovulated its getting really illustrating. There are other factors involved in this too that are too personal to post here but let's just say I feel like I am the only one that knows what I want. Right now though I think we will have to be content with our fur babies who are our pride and joys they make us smile and let's face it Kittens and Kids, yeahhh almost the same treatment. LOL
As you can see this post was all over the place kind of like my thoughts but I figured I better update this now before things get super crazy.
So much has changed from March to now. I scared myself back in April when I started have thoughts of suicide again. I didn't act on them of course, but the thoughts were there and they were very intense. Intense enough for me to scare myself and promptly seek help from my psychiatrist/ family doc and my psychologist With adjustment of medications and a lot of talking, I was finally able to push though those thoughts and get back to "normal".
My relationship with my husband has improved although I am still trying to get him to open up to me and for us to communicate more, it hasn't been to the point where I want to end the relationship ( It had been to that point, a few months ago but we pushed through it) My marriage vows are scared to me and they are promises I made to God myself and my husband, I don't break my promises. Through everything I vowed to be there and so here I am, he is there for me too, through everything and let's face it, I can be a horrible person to live with these days stress and pain do some really really weird things to my mood.
One of the biggest changes in my life at the moment is the fact that after two years of being stuck in one role that I was miserable in, I FINALLY was able to quit my job at Amazon. I didn't quit because of the company or my co-workers. I quit because I am now a doctoral student, and quite frankly Amazon wasn't using all of my potential ( there is so much I could have done there if I had been given the chance) and I was just unhappy being stagnant in the role I was in, so I found a new job and quit effective July 19th. My new job is starting a community choir back "home" so we are now in the process of moving. I am moving in with my mom for a while so that we can find work and I can get this choir up and running. I am not sure how long we are going to be there but its something I am passionate about and will be happy.
With the move comes other challenges like right now, we have no money, no insurance, and did I mention we lost our Family doctor ( she is only going to be seeing pysch patients now and not doing family medicine) We were heartbroken and realized that with this move we'd have to find new doctors anyway so it works out but it's sad none the less.
Currently my mood is pretty down, I can't seem to make myself happy no matter what, I am not sure if it is because I am currently not taking any medicine for my fibro and depression or if I am just really nervous about the future but I can't break this funk. Its been MONTHS in this funk, and every time I think I am making a good decision I always either regret it or second guess myself. IDK prayers are needed.
We are still trying to have a baby, I think that is another cause of my depression and stress, I found out that I have poly cystic ovarian syndrome and my hormones are so out of wack. I don't ovulate. After two months of taking fertility drugs on my end and still haven't even ovulated its getting really illustrating. There are other factors involved in this too that are too personal to post here but let's just say I feel like I am the only one that knows what I want. Right now though I think we will have to be content with our fur babies who are our pride and joys they make us smile and let's face it Kittens and Kids, yeahhh almost the same treatment. LOL
As you can see this post was all over the place kind of like my thoughts but I figured I better update this now before things get super crazy.
Sunday, March 3, 2013
Never did I think
So its been a few months since I last posted. When I did, it was about the loss of our baby. Well so much has changed since then I felt the need to post an update.
Long story short both Don and I are both in counseling. He has been diagnosed with depression and anxiety. Our marriage of two years to me is in shambles because we can't seem to find common ground with anything anymore.
I am completely at my wits end... I am not considering anything destructive, but I am not sure what to do anymore.
I've been in a massive flare up since December 28th and its been an experience.
I never thought it would come to this state, my mental state is jacked and I just tend to break down a lot now.
That is currently where I am and we are.
Long story short both Don and I are both in counseling. He has been diagnosed with depression and anxiety. Our marriage of two years to me is in shambles because we can't seem to find common ground with anything anymore.
I am completely at my wits end... I am not considering anything destructive, but I am not sure what to do anymore.
I've been in a massive flare up since December 28th and its been an experience.
I never thought it would come to this state, my mental state is jacked and I just tend to break down a lot now.
That is currently where I am and we are.
Thursday, November 1, 2012
When life gives you lemonade and ice... Spike it and have a freaking drink!
I haven't wrote a thing in here since the end of September, and it is now November 1st and I am finally able to post.
October had to be the freakiest month ( and no not because of Halloween) I've ever experienced. Why? Well.. lets start at the beginning.
In every woman's life we all go through that lovely time of every month , well since Don and I are trying and have been trying to have a baby, we've tracked my cycle and my body has been working like clock work. Well at the beginning of October, right when my cycle was set to begin, it NEVER Came! This was alarming but I didn't think much of it until about 2 weeks later and still nothing! Within those two weeks I'd gained weight, been sick every day, been tired but surprisingly fibro symptom free. Being free of pain from fibro was new since it's been about a year now since I started really having trouble but boy did I feel great! We are talking pain from 10 down to 3's 2's and 1's and sometimes NO Pain at all! This was great I felt wonderful, but was still having other symptoms like I was pregnant. So I decided to take my first home pregnancy test. When the test came back, it was negative I thought OK, I'll wait another week before taking another home test and also schedule an appointment at my OB/GYN's office to really confirm or deny this. A week later I was nervous and took the second home test ( mind you with these same symptoms) and it too came back negative!
By now I am scared but didn't let the negative tests deter me as I know that this happens sometime. I waited until my OB appointment to really get some clarifying answers. So we went on October 16th and we spoke with the nurse, she told me I was 6 weeks along if I was pregnant but we wanted to take a blood test for sure. Waiting on those results were like waiting on the results of a DNA test to prove your innocence or something it was HELL! When the results came that day, that was the low blow that we were indeed NOT expecting. So it was devastating.
Two days later we were back in my OB's Office mauling over possibilities, she ruled out any serious health concerns like cancer or cysts, and dropped the next bomb on us that we should test for infertility. This was the breaking point for us both. Our emotions had been through every single extreme in 2 weeks. Excitement that we might be pregnant- to Devastated that we weren't pregnant to scared that there was something wrong with my body, and now we were scared that we might not be able to have kids at all. We scheduled my husbands testing for a week after that appointment, and the week leading up to it all was so long and HELLISH! He was scared, I was scared, and we were both completely stressed, emotional and just at our wits end, not to mention that Flow at this point had STILL not made an appearance but I still had all of these symptoms.
My Husband had his testing for infertility and the results were done in 45 minutes, we found out we can produce and everything is above normal. More emotions right? Yep!
Finally after about 2 months of no Flow and all of this drama, we researched and confirmed that I was probably indeed pregnant and miscarried early. So another low blow. On October 23rd I noticed huge chunks of tissue within my discharge and brownish blood. Three days later FLOW decided to come back with a vengeance, fibro symptoms came back full force and yeah things are "My normal"
This has certainly been a hellish month and an experience emotionally. We just thank God for the blessings we do have in life and we are still trying to have a baby we aren't giving up but there you have it folks!
Cheers!
God Bless!
Sunday, September 23, 2012
Emotions going haywire
So I am normally not the one to be depressed about much, I've dealt with a lot of adversity in my life and I have been able to overcome it and not just feel sorry and halt my life. For the last few months I've just been depressed, and angry. Not at anything in particular but I am finding it difficult to deal with the changes that are going on with my body, and its affecting a lot. I'll describe in detail the areas that Fibro has pretty much halted or put a tremendous strain on.
Marriage and my relationship with my husband
My husband and I have ( had) a very healthy loving relationship. We still do to an extent. Since the fibro diagnosis my husband treats me like glass, we don't have the intimacy that we used to have because there are just days where he can not even touch me. Intimacy to me ( not sex) is really important to me, I like the feeling of cuddling up with my husband with his arms wrapped around me it gives me a feeling of security and protection. I really miss that, I feel so a lone now, even though I am not, I feel like it. He doesn't want to hurt me (Physically by touching me) so he abstains from it and man I'll tell you it SUCKS! To not be able to hug the ones you love because it HURTS? it sucks and it is a terrible feeling, but it is one that I feel every single day.
Also, due to the economy and the job market here in Huntington, my husband is lucky if he gets seasonal employment. I was blessed and lucky to find a permanent job and one that allows me to work from home, but my poor husband has not had that same kind of luck. So we fight all of the time about finances, He is in school and so am I , we do not have a car so we are limited both on time and transportation, so my husband has to look for a job that will work around both his school schedule and the bus schedule which do not run on Sundays. So it is tough, I stress out about money and bills and he does too but its hard to really do anything about it. So of course I stress out and get all mad and angry because i am the only one working and then he feels like crap, and we go off to our separate corners, once again ( see above ) I am alone, since we can't "kiss and make up".
He told me that due to the constant mood swings I have it is like "Walking on egg shells" around me because one moment I can be really happy and then the next I can be really mad, angry and depressed. To hear him say that honestly broke my heart and literally crushed me. I never ever want someone to feel that way and it dawned on me that wow things have really gotten bad, and honestly I am scared for my marriage. I love my husband and really don't want to loose him because I have become for lack of a better description high maintenance and a constant time bomb.
Actitivies
I've been blessed with a work from home job and right now I am taking classes online to boost my credentials while actively searching for a job in Higher education and researching where I want to get my Doctoral degree from.
So I am constantly at a computer. Due to the limitations my body pretty much put on me, the amount of physical activity I do is really limited. I used to walk everywhere and walk a lot, I got tired obviously but never hurt until now. I am limited to walking 1-2 miles a day, and that is it. Usually I can do a lot more but nope my body is like OH NO. If I try to push my self and do a lot in a day, I pay for it greatly for the next 2-3 days because my body gets pissed off as if to say " I told you to listen to me you ran me rugged and now you aren't moving for the next 3 days I need a break"
Mind you, this is only after ONE day!!!
Consequently, I've gained 5lbs and am now the heaviest I've ever been in my life! 125lbs, some may say " I wish I was that small: but to me its significant, since I've maintained a consistent weight since the age of 12 of 110 LBS. Due to not being as active as I was 3 months ago and the medicine that I take my doctor said that is what is doing it. She is not concerned and told me to stick with my 1500 calorie diet but just watch my stress eating and "comfort foods" To be always on the go this time a year ago, to pretty much being very limited in my activities now has just put me in a state of disaray and depression, because my brain and my determination says get up and push through whatever you are feeling and just do it! My body says "Hell no! sit your butt down!!" My body is winning the fight and I am one to keep fighting but I am running out to weapons to fight my body.
I have also had to cut back on everything including choral union, since I am so tired and fatigued all of the time, I am sleeping through rehearsals and so in fairness to the ensemble I will not just show up for 2-3 practices when I am feeling good so I need to get my strength back up before I can go back consistently.
Things are getting scary.
Marriage and my relationship with my husband
My husband and I have ( had) a very healthy loving relationship. We still do to an extent. Since the fibro diagnosis my husband treats me like glass, we don't have the intimacy that we used to have because there are just days where he can not even touch me. Intimacy to me ( not sex) is really important to me, I like the feeling of cuddling up with my husband with his arms wrapped around me it gives me a feeling of security and protection. I really miss that, I feel so a lone now, even though I am not, I feel like it. He doesn't want to hurt me (Physically by touching me) so he abstains from it and man I'll tell you it SUCKS! To not be able to hug the ones you love because it HURTS? it sucks and it is a terrible feeling, but it is one that I feel every single day.
Also, due to the economy and the job market here in Huntington, my husband is lucky if he gets seasonal employment. I was blessed and lucky to find a permanent job and one that allows me to work from home, but my poor husband has not had that same kind of luck. So we fight all of the time about finances, He is in school and so am I , we do not have a car so we are limited both on time and transportation, so my husband has to look for a job that will work around both his school schedule and the bus schedule which do not run on Sundays. So it is tough, I stress out about money and bills and he does too but its hard to really do anything about it. So of course I stress out and get all mad and angry because i am the only one working and then he feels like crap, and we go off to our separate corners, once again ( see above ) I am alone, since we can't "kiss and make up".
He told me that due to the constant mood swings I have it is like "Walking on egg shells" around me because one moment I can be really happy and then the next I can be really mad, angry and depressed. To hear him say that honestly broke my heart and literally crushed me. I never ever want someone to feel that way and it dawned on me that wow things have really gotten bad, and honestly I am scared for my marriage. I love my husband and really don't want to loose him because I have become for lack of a better description high maintenance and a constant time bomb.
Actitivies
I've been blessed with a work from home job and right now I am taking classes online to boost my credentials while actively searching for a job in Higher education and researching where I want to get my Doctoral degree from.
So I am constantly at a computer. Due to the limitations my body pretty much put on me, the amount of physical activity I do is really limited. I used to walk everywhere and walk a lot, I got tired obviously but never hurt until now. I am limited to walking 1-2 miles a day, and that is it. Usually I can do a lot more but nope my body is like OH NO. If I try to push my self and do a lot in a day, I pay for it greatly for the next 2-3 days because my body gets pissed off as if to say " I told you to listen to me you ran me rugged and now you aren't moving for the next 3 days I need a break"
Mind you, this is only after ONE day!!!
Consequently, I've gained 5lbs and am now the heaviest I've ever been in my life! 125lbs, some may say " I wish I was that small: but to me its significant, since I've maintained a consistent weight since the age of 12 of 110 LBS. Due to not being as active as I was 3 months ago and the medicine that I take my doctor said that is what is doing it. She is not concerned and told me to stick with my 1500 calorie diet but just watch my stress eating and "comfort foods" To be always on the go this time a year ago, to pretty much being very limited in my activities now has just put me in a state of disaray and depression, because my brain and my determination says get up and push through whatever you are feeling and just do it! My body says "Hell no! sit your butt down!!" My body is winning the fight and I am one to keep fighting but I am running out to weapons to fight my body.
I have also had to cut back on everything including choral union, since I am so tired and fatigued all of the time, I am sleeping through rehearsals and so in fairness to the ensemble I will not just show up for 2-3 practices when I am feeling good so I need to get my strength back up before I can go back consistently.
Things are getting scary.
Subscribe to:
Posts (Atom)