Hello after 3 years! Sharing my Journey and doing what works

[DreamCatcher]

Hi Everyone,
It has been sometime since I last visited this site and see many changes. Many of you I don’t recognize, but that’s okay because we are all here sharing similar experiences living with this challenging illness. I applied for disability in early 2013 and have been through all the steps. I am now on my final appeal and have now been waiting for over a year for a court date. I honestly don’t feel too positive about it, but thank God for social assistance even though its not much, it is better than nothing. That is a hard pill to swallow when you have always depended on yourself. Like many of you I had to stop working, but found a sense of purpose when I started up a little craft business from my home making handbags and hair accessories for girls just to name a few. It keeps me busy and I am able to rest when I want as well as being relieved of the rat race and all the stresses that brings. Not long after my fibro diagnosis, I was diagnosed with cancer and that too brought on significant changes and decisions. I lost my life savings and life after all that just isn’t the same. I am more serious now and even took steps to eliminate a great amount of negativity in my life, including to choose who I allow into my world now. Even if that meant family…they are the ones that seem to hurt the most. It does get very lonely because as you all know not too many people can understand this crazy syndrome how it affects and changes you. Thank God I am cancer free, but not quite over the psychological scars and what treatments rob you of. Sometimes you just ask what is it all about? On a positive note, with all these changes and minimizing stress factors, I was able to reduce my medications. I was wondering if any of you made changes in your own lives in that regard (if possible) and if you noticed any relief with your pain? I actually felt not so alone again after reading some of your stories. Maybe coming back here after all this time is what was missing and what I need. The understanding and camaraderie we find in one another.

God bless you all for the strength and courage it takes when you wake each day. Gentle hugs…Sue

[ModSupport]

How nice to have you back, Dreamcatcher! Our platform has changed, but if you can remember the screen names of your old friends here, you should be able to look them up.

Another thing that you might try is going to one of the threads you participated in and then posting on it again. That will revive the thread and send notifications to those on that old thread with you.

In any case, we’re glad you’re back and we hope that you will be too.

Seenie from Moderator Support.

[Davey02766]

Hi @DreamCatcher aka Sue,

My name is David and I joined about 2 months ago. I haven’t had the pleasure of meeting you until now. Applying for disability can be such a headache or even a migraine. I am on disability for 2 organ transplants and of course Fibro. My mother has MS and she had to be out of work for a year before she could get disability. Try to stay positive if you can. It’s a nerve wracking situation and it of course doesn’t help with your fibro. I will be sending my positive thoughts your way!

I think that’s great you started a craft business. Gives you something to occupy your mind and make some money. I have gone to a lot of craft fairs and a lot of the vendors are disabled people who can’t move around much so they make items to sell. I have a friend who does it. I am not a crafty person and I could use the extra money so I may have to learn.

C* free is awesome! When I first was reading you were diagnosed with it my heart sank. I have 2 great friends battling it and its just awful. I had a melanoma on my right forearm. After having all the cells surgically removed, I am free of it. I don’t consider myself as a C* survivor as I didn’t have to go through chemo.

After all the things I’ve been through I have the psychological scars too. Keeping myself busy is the best thing anyone can do. I am a Vice President for a chorus group so I stay busy with that. Reducing meds is a fantastic thing. Less medications means less side effects. Yay! I haven’t made many changes to myself as much as I’d like to. I don’t eat well, I try to exercise if I can, and my sleeping is off kilter. I know what you mean about feeling alone. This site has giving me something to look forward to reading others stories and trying to help where I can. We all understand what it’s like to be sick so we all understand each other in a way lots of people can’t. We are more sympathetic, empathetic and family/friends sometimes walk on eggshells around us because they don’t know what to say or how to say it.

I’m glad your back Sue. God bless you as well for your amazing strength and courage for everything you’ve been through. I may not know you but I am thrilled you’re free of the C word. (I don’t like saying it, ) Take one day at a time. That’s all we can do. Look forward to chatting with you more.

David

[DreamCatcher]

Hi David,
Thank you for your kind message and words of support and encouragement, it truly means alot coming from a fellow fibro sufferer. It is good that you joined this group and have found kindred spirits with people who sincerely know and relate to what you are experiencing and how it affects your life. As you mentioned having psychological scars that is so true and something people who have not been affected by an illness do not realize. I know after my treatments of radiation and chemo ended so did the support. It was like its over now get on with life or like one family member said to me “get with the program”. It hurts because they have know idea and not that I would wish that on anyone, it is only when something occurs in their own life is when they will truly understand. You sound like you have overcome many of your own challenges and although you do not consider yourself a cancer survivor or as you say C word, it is still cancer and scary and you went through those same emotions we all do when we get that news…kind of numb and then shock. So you have overcome that challenge and let’s pray that will be the last time you will have to where the C word is concerned.

I used to come on here quite often 4 years ago and met some really nice people. It really helped me get through some of my toughest early days dealing with my fibro diagnosis. Reading about how others were coping as well as getting support and trying to give it back too helped. It is through these times we find out who are real friends are and you are right people do not know what to say or how to be so they stay away. That is sad really because the thing I (we) needed most was someone to say hey let’s go out for lunch or anything just to change my mind. I was starved for anyone that would understand me…I was so depressed after everything was said and done, but as I was told over and over again people have their own lives. I am glad I found a sense of purpose with this little craft business…I put more into it financially getting supplies etc. then I have made, but it isn’t the point and I try not to think of it that way. I feel good and it keeps me busy. It is good you have your chorus group to keep busy and that counts for something even though you say you don’t have a craft. It’s about being passionate about something and doing what works and feels good for you.

Reading other people’s stories is quite humbling and when I read everything you have been through, you are quite strong and amazing to have overcome all of it. It must also be difficult dealing with your mother’s MS too, but I’m glad she finally got accepted for disability benefits. I’m not sure what is going to happen in my case, but I feel a bit vulnerable right now because I have lost my doctor who was my savior and biggest supporter throughout this process. He had a stroke a little over a year ago and although he recovered it took him a year of trying to get accepted back by the medical board and in the end the process was so long he decided to give in and retire. I only heard the news about 2 weeks ago…I have a family doctor I had years ago and he has taken me on, but he has no understanding of fibro and more or less keeps telling me I’m hooked on narcotics and well he makes me feel like I’m a drug addict. I am far from it, but terrified because he is suggesting by changing my diet to sugar free, gluten free and eating only organic that somehow that will rid me of my pain. He says he’s heard of a few people that it helped. Now he is not a chronic pain specialist and I don’t have a lot of faith in him for other reasons as well as this, but it is so hard to find a doctor these days. My sister is on a waiting list for up to one year because she had the same doctor as me and now has been left to fend for herself to find another.

As you said we have to take one day at a time and that is all we can do. Don’t sweat the small stuff right? lol Well David, I’ll say thank you again for writing and telling me about yourself and it would be nice to chat again. You sound like a really nice person who has been through so much more than anyone deserves. Is it true God doesn’t give us more than we can handle? Or maybe he just works on the ones he knows are worth working on? Not sure, but I know He has a plan for all of us!
Please do keep in touch
Sue

[Davey02766]

Hi Sue,

Your response should be framed because you have said exactly everything perfect as to what we go through and deal with. You sound like a woman who has an abundance of wisdom. I enjoyed reading your reply because your right in everything you said. I’m so sorry about losing your doctor. They must be upset themselves having to retire. I can’t imagine. If you don’t like your new doctor Sue and you’ve given them a chance and they don’t seem to understand, then time to find a new doctor. Patients have to advocate for themselves. We all know ourselves better than anyone and when a doctor refuses to understand what your going through, then they aren’t right for you. Your new doctor is ridiculous for suggesting you go gluten free. My partner has celiac disease and he HAS to avoid gluten or he gets very ill. Those are the people that need to avoid gluten. I’m not a doctor so it’s worth a try but you have fibro. Your not diabetic, you don’t have celiac disease and eating organic is expensive. I’m sure the few people it’s helped doesn’t have fibro or they are having a placebo effect.

Thank you for your kind words. They were much appreciated. Yes the C word was scary but I was lucky. Especially since they kept taking more cells and it wasn’t enough so to be safe they did surgery on it and removed quite a bit of skin. I have the major scar to prove it.

Yes my singing is like your crafting. It both keeps us busy and we both enjoy doing it. I have to run for now but I will stay in touch. I hope you have a great day!

David

[KillerTomato]

Hi Sue,
Sounds like you are on the right path – eliminating the negative aspects of your life lifts such a GREAT burden, and makes things so much easier. But man, it sure does hurt in the moment (especially when it’s family). I had my giant upheavals last year: quit my terrible job with my AWFUL boss, had three surgeries (said goodbye to my uterus, which has a lot of weird emotional issues), a painful fuming break up (we’ve happily reconciled after many much needed changes and counseling, etc), a move into my first house, sent my son off to college, and then had the worst fibro, headaches, depression, and health issues crop up during my actual move. I was clenching my teeth so hard during this time, I broke my filling in half, and most of the tooth came off with it! Just a little stressed.

I think for the two months after my move, I literally just SAT on the couch in my cozy little house on the heating pad, cuddled in blankets, and drank coffee or hot chocolate, and I delighted in the snow falling outside on the cedar trees (a novelty for me, as we hardly had any snow where I was before). I tried to unpack one box a day, and I watched a lot of Netflix. I tried not to beat myself up for not being more energetic, and getting things shipshape right away.

So, I guess my rambling point is: My life was exploding and imploding and my health was the thing taking the biggest beating. I changed the things that were stressing me – I literally had to, or I was going to die or kill someone! Now, I don’t pay nearly as much in rent (my mortgage is 2/3 less now), my bills are less, my job stress is non-existant (my boss was a real witch), I live in a beautiful forest and there’s no traffic, my son is doing great on his own, my relationship is SO much better. I’ve managed to ditch out the majority of the pills I was on, and now just take a daily blood pressure pill and a headache preventative (Topomax) and sometimes Tramadol. With a Trazadone for sleep. There’s moments were I feel so fricken happy, it must be illegal or something!!

My sleep is still sucky, and I’m tired all the time, and I still get headaches more days than not – but… I’m really glad I made those changes.

Personal things that I love to do? I have chickens, rabbits, cats, dogs, a large garden (flowers and veggies). I love to hike/walk in fair or foul weather. I’ve got two books written (a novel and a cookbook) that I’m waiting for fall and winter to start editing, so I can self publish. I’ve been procrastinating this, for like, ever! I also need to get my Ebay store up and running again. It’s been down since I moved last year! I sell little garage sale or thrift store finds (you’d be surprised how much stuff goes for!). It’s just for fun.

It’s so nice to not be where I was last summer, that’s for sure.

Be well, Sue. And I second everything David said!

[Davey02766]

KT have you ever gotten a sleep study? Did I ask you that already? I found out I had sleep apnea after being diagnosed with Fibro. Yes if my stress was less I would do much better but I thrive on stress at the same time. lol

Dave

[KillerTomato]

David,
Yes, I had a sleep study (which, in itself, was AWFUL! I had a really mean, sadistic tech) and have sleep apnea. I got a CPAP machine, and I use it with near perfect compliance. It did nothing to help me feel more rested. But my partner sleeps better (no more snoring for me!)!

So many other things have changed for the better for me, I figure that the sleep stuff will have to change too, eventually. I just haven’t landed on the right combination yet. I used to eat nibble on a tiny square (the size of a die) of a pot brownie before bedtime, and that helped, but we have such stony pot here in Oregon, I kept waking up at 3 am, having to pee, and I’d be really really high! It was disorienting because I couldn’t remember that I’d eaten the brownie, and I’d be more dizzy than my usual (I have severe dizzy issues) – I got really distressed. I’m going to try it with the high CBD, low THC cannabis and see if I can tolerate that better.

It sure is a big change from when we were 15 and wanted to get high, listen to Zeppelin, and drink 151 at the lake! Now I don’t want to be high, and just sleep well, for more than 5 hours!

[Lelakay7959]

Hi DreamCatcher,
Maybe I’ll get this right this time (I hit reply too soon before). I was so happy to see this site pop up in my email. I still haven’t found a place online where people are on at the same time I am. I would really like to know if there is anyone in the Indianapolis area that could recommend a good doctor for fibro. I’m currently seeing a neurosurgeon. He’s not bad, but it just seems like I should have a good day once in awhile:). From everything I read online it sounds like I should be seeing a rheumatologist. I tried calling some and was told they don’t treat Fibro. My neurosurgeon says it will never go away and will more than likely get worse, since I have multiple types of arthritis also. My family Doctor says Fibro is just a sleep issue and she can cure me. It seems it may take me a few years of changing Doctors before I see some (ANY) progress. And really I just don’t have the energy to deal with it. The neurosurgeon ordered some blood work this week to test for arthritis. What is funny is that I was diagnosed over 10 years ago, but he doesn’t hear a lot of what I say and apparently doesn’t read the medical history. He says if the blood work shows I have arthritis he will send me to a rheumatologist. It helps to have some outlet to express myself, where I’m not being given well meaning advice (If you just get up and start moving you’ll feel better. You can control this, it’s just mind over matter. If you quit doing so much you wouldn’t feel bad all the time), from people who aren’t going through what I am. Advice I can definitely use, but either from a good Doctor or people who are going through this so they understand.

[Davey02766]

Hi @Lelakay7959

Welcome! I am a fibro patient as well as well as one of the new moderators. I deleted the premature reply for you. We do have a chat feature on here but it’s fairly new from what I gather. Eventually if I can, I would like to get people to come on to specific dates and times but for now it’s postings of threads. Most people aren’t on at the same time I’ve noticed which is why posting threads seems to be better. I am usually always available and try to respond as soon as I can.

I live in Massachusetts and I was diagnosed by my Rheumatologist. There are plenty of people I’ve chatted to on this site who are in a similar situation if you take some time to read some of the other posts. I don’t know why they don’t treat fibro but they are willing to diagnose it. With all due respect, your family doctor is absolutely incorrect. Sleep issues can be a side effect of Fibro but it is definitely not the reason. We all know if we got up and moved more we would feel somewhat better but that by itself isn’t enough. I’m on Lyrica for fibro. It baffles me that there are Rheumatologists out there who don’t treat fibro. A lot don’t understand with Fibro is. They know how to say “hey you have it because of these trigger points” but they need to prescribe something like Lyrica or any other nerve blocking medication. I’m also on pain medication by my pain dr. but he understands Fibro.

I’m sorry you are dealing with this without knowing where to turn. I know its exhausting with not getting treated. I hope things get better for you soon. We just have to take one day at a time.

David

[DreamCatcher]

Hi Lelakay,
I am sorry to hear the rat race they have you on, but I think many of us have been through the same thing before we finally found a doctor who understands chronic pain and what fibro is all about. Here in Canada rheumatologists do not treat fibro, which I find unbelievable but it is true. You have to find a doctor who has a speciality in chronic pain or try to find a pain clinic in your area. It isn’t easy finding a doctor today and most need a referral and some with long wait times. It is not a nice prospect for people with fibro because you can have a better quality of life if prescribed the correct medications. Like David, I do take Lyrica as well as pain medication and there are other things I have tried for example Cymbalta which does help some people but it did not agree with me.

It does sound the the doctor you have been seeing does not have a great knowledge of fibro and its symptoms. Sleep problem is just one aspect and moving is good, but you can move 24 hours a day and some people it gives them pain to move. The thing is with this illness it affects everyone differently as well as pain levels too. A good idea as suggested by David is to read some of the past discussions and/or other people’s story. It helps to hear how others manage their daily lives living with fibro. One of the things that does help is to have the least amount of stress in your life as possible, because stress is not our friend and will only increase your pain level. You have to try different things to see what will help you. Some use heating pads and find that soothing and some find warm bath helps. Swimming is an activity that some say helps so you have to be willing to experiment in that way. First and foremost you have to find a doctor who knows how to treat fibro.

I am in a situation myself where I lost my wonderful doctor who diagnosed me and helped me to get back a quality of life. He sadly had a stroke a year ago and although he recovered it was impossible for him to return to his practice and made his decision recently. Now, I am stuck with a former doctor I used to see who thinks he knows about fibro and his primary goal is to get me off of pain meds by trying to remove gluten and sugar from my diet. He says he has heard of a few people it helped and their pain went away. I am not totally convinced, but I have been researching it online and there have been some studies done on people that said it helped them. The study was done by a Dr. Martin Rutherford and Dr. Randall Gates. I have copied the link from a Youtube conversation by them on this topic. There are several more videos they have made, but you can check this one out and make your own decisions about it. Can’t hurt to try, but I am still going to try and find another doctor.

Here is the link:
https://youtu.be/PDKQqshXgPA … You are your own best advocate and please don’t settle. I sincerely hope that you will find some relief soon and don’t lose hope because their is help out there. You have definitely come to a good place for support and understanding and I sincerely wish you well in finding a good doctor…keep us posted.

Sue

[DreamCatcher]

Hi KT,
Thanks for sharing your experiences! Wow is all I can say!! You really did a huge house cleaning in your life. No, it isn’t easy and it takes courage, strength and tenacity! Good for you persevered and now reaping the benefits of your choices. In my case, it has helped my stress level tremendously, but the price I have paid has isolated me. It’s sad because I don’t have a big family, but it has always been a toxic one and for years I took it all in for the sake of family and look where it got me. Stress is a killer and I just wish I would have placed my needs as a priority and not given so much…people take advantage and family is no different. As you said it hurts the most when it is the very people you would never think would betray you.

All that aside, you have to put your precious energy into positive things. You are so lucky to have your pets and gardens. Gardening is very therapeutic. I used to love it and could work in my gardens for hours…it was my escape. Now, I live in an apartment and do container gardening and I have my two little dogs to keep me company and a reason to get out and walk. lol My sense of purpose is my little craft business I started and I derive a great sense of accomplishment in designing and creating new things. I had never sewed in my life and decided to teach myself just through internet tutorials and Youtube videos. It was a great feeling and that really pulled me out of my depression. Now I just have to work on the lonely part lol

I’m happy for you as you really have found your nitch and working towards having your novel and cookbook published is another positive! Nothing illegal about too much happiness!

Thank you again for sharing it is truly inspiring!
Sue

[Mandy]

Thank you all for sharing your stories!I havent been doing anything with my life.I miss the old chat and old website.I’ve also been diagnosed with rheumatism and ME/cfs ulcerative colitis pernicious anaemia,POTS,endocarditis,peripheral neuropathy and finally epilepsy! I have a long list of illnesses and i have no-one supporting me.No family ive got no friends.Ive been having a horrible time since last november with a lot of bills and im only on disability

Ive also got severe depression and i dont know what to do to lift it.I need a hobby ive been trying to read but i lose concentration in the book quickly after 20 mins.I used to read for hours.Any suggestions on how to fill my time im not allowed pets and i have no garden.

Im so sorry you had cancer and for what you’ve been through all of you.

[KillerTomato]

Basil. Fresh Basil. Right now. I know it sounds ridiculous, but it is one of those smells that really really cheers me up. If you can’t get yourself over to someplace where they are selling live plants, you can at least get yourself a bunch of fresh herbs at the grocery store, and munch on some fresh Basil with a hunk of mozzerella and tomato on some bread.

If you are on disability, you should also be getting food stamp benefits, right? If you are in an apartment, with low light, you can supplement with one standard fluorescent bulb (it will raise your electric bill about a dollar a month).

Netflix depression busters: Peaky Blinders, LOST, Orange is the New Black, Santa Clarita Diet, Ozark, iZombie, Unbreakable Kimmie Schmidt, Bates Motel
If you don’t have Netflix yet, please look into getting it. It’s so cheap. And for those of us with chronic pain illnesses, we really deserve good tv!

And finally: Don’t be afraid to really take a look inside the depression, it’s there, and it’s bad, to force you to make a change in your life (for the better). It’s really brave of you to state that you have it, and it’s severe. Just acknowledging that is the first step to actually feeling better. You’ve reached out to us on this forum that you want help to lift the depression, so hurrah! Excellent job, Mandy! You don’t have to answer the question of “What now?” at this moment – you’ve done the hard part, reaching out to others, for today! Take a nap! That was hard work!

Feel free to include “Napping” as your new hobby! I know it’s one of my favorites right now.

Be well Mandy. Others will be along soon to offer better advice than mine.

[KillerTomato]

Sue, I love sewing! I haven’t done it in years – I taught myself how to quilt (machine, not hand). You’ll have to upload a photo of your creations – my interest is piqued!

[DreamCatcher]

Hi Mandy,
Thank you for sharing your story with us. I will agree with everything Killer Tomato said and very good advice. She is right, you have come to a good place where everyone understands what you are going through and we are all here to support and encourage one another. There are many past topics archived with all kinds of discussions on medications, to nutrition anything you can think of where you have a concern. You can just type it in the search box and usually there will be many posts offering words of wisdom and shared experiences.

It’s a huge step you have taken to open up about yourself and your depression. There is no shame in that and talking about is courageous and a good start and path to healing. It is very sad that you are going through all of this alone. I will say that my experience when living with an illness(es), is that friends and family can only take so much or many do not know what to say or do so they do nothing. Its like have leprosy they stay away. I also noticed that some put a time limit as to how long it will bake you to just get back “normal”. I don’t know whether to say I truly understand some of these reactions and I have been told it is my expectation that creates my hurt and disappointment. Is is so wrong to think that you can trust your family with your emotions and that they would have compassion and understanding? These are things I ask myself, but it doesn’t change anything so accepting it the way it is will be better in the long run for us.

Moving on in a positive way and finding new and interesting hobbies is something you could consider. For myself, I had never sewn and I decided to start a little craft business from home making handbags for women and little girls. First I bought a sewing machine and then I taught myself by going on Youtube or looking at any illustrations with step by step instructions. Its two years later and I can say I have learned a lot! Its been fun and rewarding mentally as well. I feel a sense of purpose each day and fulfillment. I don’t have many people in my life either so I had to find something to help lift the depression. What interests you? Or is there something you have always wanted to try but never have. Do you like to write? Maybe you could create a web page and blog about your thoughts and ideas. There are lots of people out there going through similar things that like to read and are inspired by other people’s stories and perspectives on life. Anyway, these are just examples to maybe encourage you to find whatever that something is that will make you feel good about yourself. Something that will motivate you when you wake each day. Once you feel good about yourself, you will attract others even if that’s just having a small chat with the cashier at a supermarket or go out if you can and sit and have a coffee bring something to read. You would be surprised at how many lonely people force themselves to do this even for the sake of leaving the house for an hour. I’m not sure if you’re physically able to get out and do this, again just suggestions.

Your doing good Mandy and things will only get better. I am sure like Killer Tomato said there will be others that will give you their advice and ideas of what helps them to feel good each day. Keep strong and come and chat here anytime, you will always find kindred spirits ready to give kind words of support and encouragement!
God bless,
Sue

[Mandy]

i can get dried basil fresh basil would get spoilt easily as i cant eat read and im lactose intolerant but thanks for the suggestion :)alas im not in america we don’t get food stamps.I do indeed have bright bulbs throughout my flat i like bright light at night.

i do indeed have netflix i joined when it first came to ireland.All good suggestions and i love zombies!I wish i could nap but i have insomnia so i am unable to nap but also a good suggestion!Thank you for your suggestions killer tomato!

You speak the truth dreamcatcher

you have a wonderful hobby! i dont think i could see myself sewing though but its a great thought i might try it.true crime stories interest me ad in documentaries,articles and books.i like podcasts i like anything horror related.i adore listening to music.i have a blog i like to rant on but it doesnt seem to help me.

I never have any money so i dont go outside usually but i am able to come put once or twice a day if i have to.

thanks to the both of you for the awesome advice and support and suggestions much appreciated

mandy

[DreamCatcher]

Hi KT,
I tried sending you some pics direct to you in a message, but I am not sure if it worked. Somehow it says its a post…?? Let me know if you have received it, if not I will resend. Here is one for now.
Sue