I had a bad day at work. I felt anger. For me, anger is something more than just anger. I think I was feeling lost, alone, loss of control, and inability to communicate with co-workers about what I am feeling. I fear others talking about me and my obsession with my body.
1) After seeing the ID, she recommended a Rheumatologist with her referral. I chose to speak with my PCP because I know him and his resources for me. I have sent two email messages to his staff and left a voicemail with the referral specialist. She has not returned any communication with me. I am angry because I feel my body decline with the pain. I feel like I am losing time being patient. I have been patient for the last year! I pay my medical bills, have insurance yet do not get a simple referral. I AM ANGRY that I am not getting a simple referral placed. In my mind, what is the problem? Your lack of follow-up is resulting in my quality of life. MAD!
2) I read discussion on this website and I feel lost. I feel like I have not connected with anyone yet. I want someone to help me transition from the initial/acceptance portion of the diagnosis to understanding. Please DO NOT be offended, I read about the medications you are all on at your stage of this chronic disease yet I feel so uneducated. I understand this comes with time and trying the medications that work for each of your different symptoms. I comprehend this... At this point, I feel alone. I need someone to encourage me. I need someone to start from the basics for me.
3) Does anyone else feel like they need to (for lack of a better term) live life staying balance? Here is my best examples: I feel like I require sleep or the pain will be worse...I feel like I need to keep stress down or I am exacerbated with symptoms. I feel like exercise makes for a better day for me. Is my thinking correct for not having a Rheum as of yet?
4) Lastly, is anyone in their 30s on here?
Here is my vent. I need to share my fears. I am here for support. i am here to understand. I feel sad. I am so determined. I consider myself the "Against All Odds" girl BUT right now, I feel cornered and secluded.
Venting is always fine. It’s perfectly normal to need to vent at different points. You were saying that you need help progressing to understanding. This takes time. I didn’t find this group until I had a change in my status, with a worsening of symptoms.
There actually is a pretty broad range of ages here. There are some people in their early to mid twenties all the way on up to seventies. And the age of diagnosis is pretty broad. I was diagnosed at age 36, within a year of the birth of my second child. Anger wasn’t my major issue, but confusion and guilt were. Guilt that I can’t do all that I want, that I may have passed things on to my children.
I try and keep active, but my level of activity varies with how much pain I am having, and how much movement excacerbates my symptoms. I am fatigued a lot, and typically need to rest during the day.
Almost 6 years after diagnosis, I understand more. Not everything, but more. While my disease is under fairly good control, it continues to progress, and there is damage at this point.
Use your feelings of anger to propel you forward. Use it to educate yourself. Use it to get the help that you need. Keep us up to date on how you are progressing.
Hi synergysarey sorry to hear that you have had a bad day most of your thoughts and feelings are to be expected and most of them I can relate to myself. I feel like I have been given a diagnosis without any emotional support or help with understanding what will happen to me as this disease progresses and this makes me worry even more. I also feel as though people are laughing or talking about me at work because I have to wear wrist splints they probably are not but maybe this is because I am conscious about it myself.i feel as though if I mention my illness that they change the subject I don’t know whether this is because they don’t know what to say or bc they are just not interested. so I just don’t mention it anymore I think they just don’t understand thou and how could they most of the time I don’t understand it myself I can understand why you are angry about not getting a reply back off the referral but. I have also learned that nothing gets done quickly from my point of view I have been on the phone to my rheumy loads of times in floods of tears telling them that i can’t cope with the Pain only to be fobbed off and told that they will get back to me and they never do all the points you made at number 3 about living life on a balance I agree with and I think most of the people on this sight would to. First of all you need to sort out the rheumy Appointment have a think about what medications you want to try some people want to try other holistic treatments instead of all the drugs everyone is different. he should be able to answer most of your questions or fears you have about Psa you need some sort of medication to slow down the psa or keep it under control some of these are methotrexate sulfasalaZine or the biological humira enbrel etc. the anti inflammatory drugs to reduce inflammation like arcoxia and then there’s the painkillers tramadol cocodamol etc you can also get some to help you sleep or relax the muscles like amitriptyline you will probably know most of these because of your type of work. Keep reading the posts on here as most of the people are going through the same as you they understand.Also research on the Internet about PsA there is a wealth of information on there to help you understand this disease and finally if you ever want to talk I’m always here to listen no question is to silly or too much trouble. Take care and keep us posted xx
SynergySarey, Welcome! It’s really too bad that you’ve had to join this “club”, but it is a good place to meet people, get support and (oh yes) vent.
Sadly, I am not in my 30s, but there are plenty here who are. There are also nurses who are coping with similar challenges to yours: Kirsten and LouiseHoy come to mind. Keep a lookout for them.
I must be having a senior moment. I know what a PCP is, but what’s an ID? What I, and a lot of us here, do know is that feeling of anger and frustration when the medical machine just goes too slowly for us. It may just be one more day for them, but for you it’s one more day of uncertainty, pain and frustration. Yes, we’ve been there.
One of the best things you can do for yourself is learn as much as you possibly can about this condition. Sadly, most PCPs haven’t got much of a clue about this disease, and some of the rheumies we’ve met don’t seem to be much better. The key to getting the best care you can get is to educate yourself. (I was a slow learner, yes, I had to learn the hard way.) I’d highly recommend this book, which is available both in hard copy and in e-book format on Amazon:
Finally, something that tends to happen is that people hang out here when the going is tough, and when their life starts to get some balance, they don’t come here as often. But don’t worry: there are people with PsA who have lives in balance! They may not be in the majority here, that’s all.
Wishing you all the best with the challenge that life’s thrown at you. Keep in touch!
I have been 30 twice now. I was first hospitalized with this stuff at 23 and ultimately gave up my "dream" At least they don't put people on the rack anymore (traction) I understand a lot more than you might think. there are a lot of 30 somethings here so forgive me if sound like a "parent" from time to time it hard to get out of the role - the others are used to me by now.
Seenie doesn't come nearly as often as I'd like, she is very wise. Not being the sharpest tool in the shed, you are a nurse or similar?? If so, you need (and I have said this before) to start immediately developing as much flexibility as you can in your middle finger. You are going to need it. I started out in healthcare as respiratory therapist stayed in through college and grad school because I liked dipping in the nursing pool. went to med school and then went a different direction into academia. I still teach healthcare folk today. In all those years there has been one nagging question. Why do nurses who thrive on caring for others eat their young? If nothing else you WILL become a better nurse. It will take time but the first thing you need to get past is the natural cynicism that comes with your job.
Here is todays lesson (or scolding as the case may be.)
There is no difference between chronic illness and acute illness. One just lasts longer than the other (healthcare workers forget that and tend to blame the chronically ill for being sick.) From this day forward you have an acute illness. It just isn't gonna go away after a week or so, an operation, or a bottle of pills. Its a full time nursing project. rotating pillows, moving walking etc etc will help it get a bit better Your colleagues will assume that it can get better because that what they do. (EVERYBODY knows nurses make people well not doctors)
This is where that middle finger flexibility comes in. When you can use it and move on almost pitying your colleagues, you WILL feel better I promise. I'll send you a bottle of my Panty Dropper Port if you don't (it homemade chocolate -orange wine about 30% alcohol a glass of it and you won't care what ANYONE thinks.) You will become more independent with this disease (any chronic disease)
A word of warning don't waste anytime telling anyone at work how you feel (feelings, if you can't phsically do something you can't physically do it) all they will hear is "oh oh looks like more work for me while I cover for Malingering Mary" You will in time earn their respect. We have our ways but you need to stay in touch. We do all care.
Sorry you are having a rough time. I've had this disease since I was 10, so I've been through high school, college, marriage, working, having children, moving, etc (all the adults stuff) all with this disease (I'm 41 now). Sometimes my life is in balance, sometimes not (right now I'm back in med merry-go-round mode).
Am I right that you have been waiting a year for a referral to a rheumatologist? If so, you'll have to be the squeaky wheel and call DAILY until they get so sick of you they write a referral. One thing this disease teaches you is to be very proactive with your healthcare. If you wait around for calls back and someone to do something, it will never happen in a timely manner.
I also recommend the book Seenie recommended. I'm reading through it now, and it is not much new for me, but it would be GREAT for someone new to the disease as a reference. It lays everything out, including all the meds we through around here, which can be very confusing.
One thing that helps you feel part of the community is to post frequently. That way we get to know you, and you get to know us through our responses.
Hi Synergy I am so sorry things have not been dealt with as they should but I can only comment on the disease as I am not in the USA but Australia. My journey took nearly 15 years to be fully diagnosed. I had so many different aches and pains that would come and go I think I had PsA a long time before diagnosis.
I had an appointment with a Rheumatologist who prescribed Methotrexate and was evaluated 8 weeks with no follow up. So with other worsening pains, a few months later finally I got referred to a reliable Rheumatologist who has been there for me now for 5 years. Do not become discouraged life can improve but you have to be a proactive patient by telling your doctor the truth and be assertive by telling him how bad this disease is affecting your life and how frustrated you are and worried that nothing is improving. I hope for you this helps but if not please return here and let this place know how you are we are very willing to answer any questions that we can help with.
I was a nurse and had never heard of PsA and had to do some research to understand that. Then the biggest change was the way I live my life, accepting that each day was a new day and you life can be like a box of chocolates and you never know what that day might bring but is like a box of
chocolates you never know what the new day will bring
Yes I was venting because I consider this site a place that I can vent. With me being diagnosed within the last month, I came to this group so that I could vent. I am coming to this group from the very beginning so that I can learn more and find other who can help me understand. I do not expect anyone to understand this unless you live this... the symptoms are not just simple or clear cut. The symptoms vary from each of us yet can be similar in many other aspects. So yes I am here to make friends who will support me. :)
As for the age, I asked this question so that I know where others are within their own lives. I understand that this disease is not selective to a specific age group. For you, I can sense that you would feel guilt re: potentially passing this disease to your children. I do not have children, wanted children but not sure if I should have a child now.
I will take my anger and make a positive. I needed to vent on this particular night. Since this post, I have seen my Derm and she is supposed to make a referral to a Rheum. She also have me a steroid shot to help with pain. I have also read 2 books over the weekend. I am educating myself.
I believe I am coming to terms with the idea that my life may be limited in what I was once able to do. I am not liking that idea but I recognize it is important that how I choose to live my day will make a big difference in how I feel.
Thank you Stoney. :)
Stoney said:
Venting is always fine. It's perfectly normal to need to vent at different points. You were saying that you need help progressing to understanding. This takes time. I didn't find this group until I had a change in my status, with a worsening of symptoms.
There actually is a pretty broad range of ages here. There are some people in their early to mid twenties all the way on up to seventies. And the age of diagnosis is pretty broad. I was diagnosed at age 36, within a year of the birth of my second child. Anger wasn't my major issue, but confusion and guilt were. Guilt that I can't do all that I want, that I may have passed things on to my children.
I try and keep active, but my level of activity varies with how much pain I am having, and how much movement excacerbates my symptoms. I am fatigued a lot, and typically need to rest during the day.
Almost 6 years after diagnosis, I understand more. Not everything, but more. While my disease is under fairly good control, it continues to progress, and there is damage at this point.
Use your feelings of anger to propel you forward. Use it to educate yourself. Use it to get the help that you need. Keep us up to date on how you are progressing.
Well I had this exact attitude myself. I am strong and I will fight back! I will exercise, eat vegetables, sleep well, and build up my strength. I have lived alone for years after a divorce. I have worked 3 jobs to get out of debt while maintaing a house with a pool--on my own. I can do anything. Yeah well.... I became sick and asked my friends for help. Guess what? They are all nurses and no one has time to help. They are also working all of the time. I do not have a husband and I do not have any siblings. Guess what? I was basically left to be alone and miserable and scared in the dead of winter. I slept for 3 days straight. I travelled to my doctor who is 50 minutes away while driving my manuel Jeep. I thought I would die otherwise... I am grateful that he called to check on me. I am grateful that he is my friend and guided me to the Infectious Disease doctor who guided me through the process of making sure something was not killing me immediately.
So yeah.... I need to know my limits. Rest because I have never seen a disease that makes you go to sleep like PsA. My life is now going to be completely different. The unknown is very scary. I will just take it day by day.
Lovemydogs said:
i'm glad you found this place!! I think it will really help you. Read through past posts (which I think you may already have done) You will find that we all go through different things. I was diagnosed 2 years ago - at 38...I just turned 40. When I got my diagnosis...I thought...I'm strong! I can deal with this!! I can do it on my own. Sadly...I almost ended up with full fledged depression from those feelings and quickly realized...I don't have to do it on my own...and I really am not as strong as I thought. But...I'm lots better than I was 2 years ago. Looking back, I wish I had taken some time off work to deal with my diagnosis. I, like Stoney, felt guilty at times for not being able to do the things I've always been able to. I've learned that its ok...I don't have to always have the strong back in my family! I don't have to always hold it together for them...they need to and can...own their own growth and help out around the house. Don't be hard on yourself. Read read read and share share share. Whatever you do, don't hibernate. That's what I did. Today, I don't know how on earth I made it to work each day. I was in a fog and just going through the motions. I ended up having a dr prescribing me a a psychotropic - what a life savior that has been! I feel like myself again. and you will too.
Remember...take time for you...I know we're young (at least I consider myself to still be like...25 lol) but our bodies want to act old. Keep your chin up, learn all you can and get to a dr. :)
Thank you for your suggestion! I read the book over the weekend. I felt that your suggestion was the most helpful. It was very medical and research based in wording. I found it straight to the point and helpful. I am very grateful that you suggested this for me to read.
I can also see where people do not hang out here when life is going good for them. How easily we can forget once we feel better.... I want to be able to stay connected. I would like to help others even if I am having a good time in my life. I can't say that I will promise this but I can try.
Thank you for the book suggestion and encouragement because I feel better mentally today.
PS= ID means Infectious Disease
Thank you!
Seenie said:
SynergySarey, Welcome! It's really too bad that you've had to join this "club", but it is a good place to meet people, get support and (oh yes) vent. Sadly, I am not in my 30s, but there are plenty here who are. There are also nurses who are coping with similar challenges to yours: Kirsten and LouiseHoy come to mind. Keep a lookout for them. I must be having a senior moment. I know what a PCP is, but what's an ID? What I, and a lot of us here, do know is that feeling of anger and frustration when the medical machine just goes too slowly for us. It may just be one more day for them, but for you it's one more day of uncertainty, pain and frustration. Yes, we've been there. One of the best things you can do for yourself is learn as much as you possibly can about this condition. Sadly, most PCPs haven't got much of a clue about this disease, and some of the rheumies we've met don't seem to be much better. The key to getting the best care you can get is to educate yourself. (I was a slow learner, yes, I had to learn the hard way.) I'd highly recommend this book, which is available both in hard copy and in e-book format on Amazon: http://www.amazon.com/Psoriatic-Arthritis-Facts-Dafna-Gladman/dp/01... Finally, something that tends to happen is that people hang out here when the going is tough, and when their life starts to get some balance, they don't come here as often. But don't worry: there are people with PsA who have lives in balance! They may not be in the majority here, that's all. Wishing you all the best with the challenge that life's thrown at you. Keep in touch! Seenie
Your comment was interesting to say the least. Initially, your response just irritated me but I believe you meant well. I had to think about your response for a couple days before I answered you.
First of all, I NEVER doubted that you know quite a bit about this disease. There is a reason why you have posted on 1000+ discussions and are a MODERATOR (however you become a moderator). I believe that you know so much about this disease that you could be considered an expert witness in a trial. So yes you have been 30 x 2 in your life which means that your experience and wisdom could help so many people. BUT your unique personality served me no purpose. I know I have a fighting battle ahead of me and do not expect for you to be against me. I do expect you to be on my team to assist me.
I have done this RN business in an Emergency Room for 12+ years. Yes I know that nurses do not have time for me or pity for my health issues. I do not bother nor do I tell much of anything to anyone. I go to work with a smile. I am up moving. I do not whine. I was just over it when I posted my feelings. I was in pain. I would never dare show any sort of feelings at work.
Nurses eat their young=>is an interesting concept. Nurses could potentially run with another's weakness and gossip. I have been in this business for too long so I think it could be on a person to person basis. I think it is a competition for some, especially in a critical care situation. I don't know why others eat the young. Personally, I enjoy being a preceptor and have students assigned with me to learn the ER. College level who are about to graduate.
OK so hopefully, I will understand your attitude and you can be helpful to me.
PS=> I disagree with your comment about chronic and acute disease. PsA is chronic BUT has several moments in life that it becomes an acute disease. PsA is chronic and will NEVER go away.
tntlamb said:
I have been 30 twice now. I was first hospitalized with this stuff at 23 and ultimately gave up my "dream" At least they don't put people on the rack anymore (traction) I understand a lot more than you might think. there are a lot of 30 somethings here so forgive me if sound like a "parent" from time to time it hard to get out of the role - the others are used to me by now.
Seenie doesn't come nearly as often as I'd like, she is very wise. Not being the sharpest tool in the shed, you are a nurse or similar?? If so, you need (and I have said this before) to start immediately developing as much flexibility as you can in your middle finger. You are going to need it. I started out in healthcare as respiratory therapist stayed in through college and grad school because I liked dipping in the nursing pool. went to med school and then went a different direction into academia. I still teach healthcare folk today. In all those years there has been one nagging question. Why do nurses who thrive on caring for others eat their young? If nothing else you WILL become a better nurse. It will take time but the first thing you need to get past is the natural cynicism that comes with your job.
Here is todays lesson (or scolding as the case may be.)
There is no difference between chronic illness and acute illness. One just lasts longer than the other (healthcare workers forget that and tend to blame the chronically ill for being sick.) From this day forward you have an acute illness. It just isn't gonna go away after a week or so, an operation, or a bottle of pills. Its a full time nursing project. rotating pillows, moving walking etc etc will help it get a bit better Your colleagues will assume that it can get better because that what they do. (EVERYBODY knows nurses make people well not doctors)
This is where that middle finger flexibility comes in. When you can use it and move on almost pitying your colleagues, you WILL feel better I promise. I'll send you a bottle of my Panty Dropper Port if you don't (it homemade chocolate -orange wine about 30% alcohol a glass of it and you won't care what ANYONE thinks.) You will become more independent with this disease (any chronic disease)
A word of warning don't waste anytime telling anyone at work how you feel (feelings, if you can't phsically do something you can't physically do it) all they will hear is "oh oh looks like more work for me while I cover for Malingering Mary" You will in time earn their respect. We have our ways but you need to stay in touch. We do all care.
I’m so glad my response was helpful to you! Thank you for saying so: I’m retired, and sometimes I wonder if I’m much use to anyone. Yes, that is a good book. In fact, it was written for lay people, but I think it makes a good reference for medical professionals too. In fact I “gifted” my GP with a copy! I’ll bet I’m her only patient that comes with an owner’s manual! LOL
Take good care, Sarey!
SynergySarey said:
Seenie,
Thank you for your suggestion! I read the book over the weekend. I felt that your suggestion was the most helpful. It was very medical and research based in wording. I found it straight to the point and helpful. I am very grateful that you suggested this for me to read.
I can also see where people do not hang out here when life is going good for them. How easily we can forget once we feel better… I want to be able to stay connected. I would like to help others even if I am having a good time in my life. I can’t say that I will promise this but I can try.
Thank you for the book suggestion and encouragement because I feel better mentally today.
PS= ID means Infectious Disease
Thank you!
Seenie said:
SynergySarey, Welcome! It’s really too bad that you’ve had to join this “club”, but it is a good place to meet people, get support and (oh yes) vent. Sadly, I am not in my 30s, but there are plenty here who are. There are also nurses who are coping with similar challenges to yours: Kirsten and LouiseHoy come to mind. Keep a lookout for them. I must be having a senior moment. I know what a PCP is, but what’s an ID? What I, and a lot of us here, do know is that feeling of anger and frustration when the medical machine just goes too slowly for us. It may just be one more day for them, but for you it’s one more day of uncertainty, pain and frustration. Yes, we’ve been there. One of the best things you can do for yourself is learn as much as you possibly can about this condition. Sadly, most PCPs haven’t got much of a clue about this disease, and some of the rheumies we’ve met don’t seem to be much better. The key to getting the best care you can get is to educate yourself. (I was a slow learner, yes, I had to learn the hard way.) I’d highly recommend this book, which is available both in hard copy and in e-book format on Amazon: http://www.amazon.com/Psoriatic-Arthritis-Facts-Dafna-Gladman/dp/01… Finally, something that tends to happen is that people hang out here when the going is tough, and when their life starts to get some balance, they don’t come here as often. But don’t worry: there are people with PsA who have lives in balance! They may not be in the majority here, that’s all. Wishing you all the best with the challenge that life’s thrown at you. Keep in touch! Seenie
When you get to a rheumy, get a final Dx (its not always a given as many here have found out) and a treatment plan,, I would suggest you do treat it as an acute illness. Miss a dose, skip your exercise, forget your PT, over extend etc. You will lose ground very quicly and not always get it back. There is nothing chronic sbout it. Everday is a battle. Even when you as people your age often do go into a period of remission, the disease will rage on. Damage will occur, organs will be attacked. Pain is only a symptom its not the disease.
Synergy,
I am sorry you are having a thought time. I too am just starting off with all of this. I am 36 years old and was diagnosed within the past few months. I am a dietitian but stopped working when my daughter was born, almost 4 yrs ago. I have been having a hard time as well dealing with all the limitations of this disease and what may lie ahead. Please know that u r not alone in this struggle and I (we) are here to listen and help
Melissa
I think most of us feel alone often, no one will be going through the exact symptoms and feelings we are going through, no one will have the same external stressors. So we are in effect alone. But I've found that the people on this site understand the problems I face, they can put themselves in my place and understand.
The advice above is all good, the good thing about advice here is that we can take what makes sense to us and leave what doesn't, no one will be offended.
You can never make people who have no interest, understand, and lets face it most people at work don't want to understand and as tntlamb says they will often see us as a problem for them........I say tough titty! I do my job, I work hard because I don't know any other way. I see ways to work round something I cannot do easily.
Theres nothing wrong about being angry about having a disease that interfers with your life, its all part of getting to a state where you can accept yourself as you are, my PsA is as much a part of me as my smile, the freckles across my nose, or my need to eat chocolate and swear lol. Look up the "5 stages of grief"........we grieve for our healthy selves we were, that process can take weeks months or years and often depends on if you are a glass half empty or glass half full personality.
One thing my PsA has made me, and thats much more understanding of patients of mine coping with pain and chronic illness, I put that knowledge to good use every day.
I feel fairly well balanced in my life and I do try to get back on here every so often, I don't always comment but try to read whats going on for people.
Keep reading, keep educating yourself, you will find a balance thats right for you x
First of all, vent away whenever you feel the need. You seem to be feeling more empowered after the weekend reading and thinking and responses from others.
Secondly, you'll have to forgive my short-term memory issues - there were so many things I wanted to comment on in response to your original post, but I'm having difficulty remembering everything! LOL
I'm 38, was diagnosed at 36, and have lived with PsA for most of my life, my symptoms starting at age 4.
I think an essential part is getting to know your body and what works for you and what doesn't as far as food, exercise, activity, rest, etc. goes, and it sounds like you're well on your way in that area. Balance is a very important for everyone living with PsA. Too much stress or too little sleep (or...or...or...) can tip the scales toward a flare. The challenging part is that for some, the balance point changes daily.
One of the most difficult parts of this disease for many of us is the unpredictability and uncertainty that comes along with it. We don't know how we'll be feeling tomorrow, a week from now, a month from now ... or for some, an hour from now. Letting go of expectations was huge for me, and has made life much more pleasant.
Hi lamb, the worst is past I’m pleased to say…getting stronger week by week, working walking, swimming and resting. Other than the constant costochronditis and shoulder pain I’m doing ok
Yes, that is a good book. In fact, it was written for lay people, but I think it makes a good reference for medical professionals too. In fact I “gifted” my GP with a copy! I’ll bet I’m her only patient that comes with an owner’s manual! LOL