End of my rope

General
1

I was diagnosed with PsA two years ago. Since then, I feel like my life has been a virtual rollercoaster. I just want my "old" life back, the "old" ME back.

I'm frustrated that I can't do nearly what I was able to do before this diagnosis. I get winded just from picking up after the kids, doing dishes, or gathering laundry. I tried to mop our kitchen floor the other day, and afterwards had to take a long nap just to be able to function for the rest of the day.

I work full time as an orchestra teacher at 9 elementary schools. I travel to two schools daily, which means setting up and tearing down the room at two schools daily. I have about 350 students, grades 4-6, that I see once per week. I'm not doing the kind of job where I can just sit at a desk and work at my own pace. My job is very physically demanding and when I get home, I literally have to crash for a couple of hours.

I can't go anywhere without having some child ask me " what's wrong with your ARMS??" because I have horrible psoriasis. I'm very self-conscious about my condition. Right now, just writing this, I want to break down.

I have two wonderful sons, 14 and 10, and the most incredibly supportive husband that I could ever hope to have. They are my world. They totally understand my challenges, and are so patient and loving to me. But I feel tremendous guilt because of the things I can no longer do for them.

I'm on Methotrexate (1 ml injection every Friday) and Enbrel. I have a pain management doctor who has put me on Nucynta because I needed something strong for my pain that I could still take while teaching. It does help, but I'm just at the end of my rope.

I just sent my therapist a text at 2 am asking to be seen this week. I'm feeling very low right now. Life should not have to be this difficult. I am on Cymbalta for depression, which my doctor had doubled because of my depression. My husband is a Marriage and Family therapist, and I feel like I've been horrible to him lately. He is dealing with his own issues, too, and I feel like a horrible wife that I can't be there for him as much as I want to. I feel useless to everyone. I am considering checking myself into the hospital because there are times that I would like to just end it all.

Thank you for letting me vent and rant at 2:30 am. I have to be up in a couple of hours and just can't sleep. Maybe if I take a few more pain pills, I can just drift into a beautiful long sleep.....

I need any support you can offer, friends. I do not think that I'm thinking rationally right now, which is very disturbing to me. Please help.

2

I'm not really sure what I can say that would be helpful other than that I can understand where you are coming from. If you are feeling suicidal, then PLEASE go to a hospital or call whatever your emergency number is. We are here for you when you need support, but do you have anyone around who can physically be with you until you are in a better state of mind? I'm sorry you are going through such a tough time, I don't have any answers but I hope things will improve for you after speaking with your therapist.

3

Bless your heart hon i'm so sorry you are going through this. I can sympathize on most of it. I was diagnosed around 2 years ago as well. I don't have as much of a break out of the plaque on my arms but I do have it there and it is growing. Most of mine is on my scalp which means I scratch my head all the time and have flakes in my hair. Very embarassing! I used to wear black clothes all the time to at least play down some of my weight but now I can't do that because I look horrid when I do. I do Methatrexate 6 tabs a week. They'd like me to do 8 but it messes with my liver enzymes when I do.

I am like you in that I get so tired of not being able to do what I need, want, and used to do. I can't keep house like I used to, I can't do as much with my special needs son like go to the park or the zoo or anything because I can't do the walking. And I get winded very easy too I thought it was because I used to smoke years ago but now you've given me something else to talk to my doctor about. Be encouraged hon. This disease is horrible but you are not alone. I'm learning there are a lot of us out here. We just all have to stick together. We have to know that even though we can't do what we used to do we do still have life. We do still have a quality of life and we do still have family and friends that love us and want to help us no matter what our condition.

I don't mean to broach this subject wantonly or anything and by all means I don't want to offend, but as a preachers wife, I have to tell you that if you know Jesus, you know He walks with you every step you take. He said in His word the joy of the Lord is my strengh. And it says, when we are weak, He is strong. When you have those times when you feel like ending it all, begin to pray and to thank God for all of the good things you have in your life. When the devil brings you negativity, take him down with positivity! Think about all of the wonderful things you have. I pray this helps you and know that we'll be praying. You hang in there. You have a wonderful family and wonderful friends that love you and you have us as well. We're all here for you no mattter what time it is! Be blessed!

4

My tears are flowing right now... the lord has guided and lifted me up the entire way. I am struggling on my decision to start taking ENBREL. Does it really help? Hon. Think about your family. They will give u the will to keep going I will keep posting as I am new to this. But I will help in any way I can. Just ask

5

What an awful time of it you are having, and venting is a good release so I do hope you feel a little better for calling on people on here that have the same type of suffering, pain and an understanding of what life is throwing at you. Things can change quickly so my fingers are crossed for you that this is the case with you. I can relate to the irrational thoughts, and lack of sleep and pain can do that, so please remember you are NOT alone on that. I wish you strength for today, and I admire your courage and honesty in your writing. Take the love of your family and wrap it round you .....and just vent on here when time out is needed......good luck my friend

6

In moments like these it is always comforting to be able to "vent" to people who can relate to what you are going through, and I can safely say almost all of the people who are reading this post can relate to what you are dealing with, Me being one of them. I have had the same feelings and issues, I have felt like a horrible Wife, Mother, Daugher and Friend, however in times like these is when we see who truly loves us and will be there for us unconditionaly. I know it is a hard but it will get better and life will get back to a "new" normal. But no matter what it sounds like you have a wonderful support group and of course everyone here is always willing to lend an ear!

7

I read your post and felt compelled to write to you. I have also been living with psoriatic arthritis for eight years now. I am a single father of a nine-year-old and currently I am working on my PhD. For me, what helped was to understand my limitations and to greatly alter my lifestyle. For example, I am now 39 years old and was diagnosed when I was 30 and before that particular time I owned and operated a fairly large construction company. However, having this particular disease negates me from doing any type of physical work. Subsequently, it took me about four years to recognize that I had to change my life and that’s when I went back to college and finished several degrees. Again, for me it was understanding that my life most likely will never be the same and it’s something I need to except on a daily basis. However, what gets me through my darkest days is my daughter and that I want to have the ability to see her grow into an adult and possibly have the chance of watching her mature into adulthood. Furthermore, I’m also hopeful that when my education is finished next year that I will be able to find a particular position that is not laborious in nature so that I can work and contribute back to society as I once did. So, my suggestions to you would be to first find a way to come to terms with your disease, and if your particular work is too hard that perhaps you could find another position that would put you more in a administrative setting rather than a your current physical work setting. It sounds like you have a great support group and obviously you have education as well; So I would just tell you again that understanding the disease and trying to work with it instead of against it may be helpful. Remember, that you have a family that loves you and people that depend on you know matter how you feel at times and that your physical presence is just as important as anything else. I do know that having this particular disease is extremely hard with the different medications that we all have to take and the doctors we have to see and the pain management that we need to go through can sometimes be exhausting. Nevertheless, in the last year or so I have seen some improvement that I never thought I would have through newer medication on the market that was not possible when I first came down with psoriatic arthritis. And who knows, maybe in a few more years there will be newer advancements in regards to our particular disease. I don’t know if I helped any, but I do wish you the best and I hope you still fight this particular disease and not allow it to get the best of you. Good luck to you and your family and God bless.

8

I am so sorry to hear you are struggling. I believe alot of us have felt the same at some point or another. Speak to your doctors. Get your pain management working. Pain is not easy to live with. Its probably the biggest threat to you. I got sick and had to go 9 months without meds to control the PSA . Its probably the worst pain I have ever experienced. Please please feel free to vent sometimes its the only way to let it out. Things will get better once your medication is balanced you will have less pain better sleep and have a much improved outlook on life. As supportive as family can be you can’t see fatigue and depression. Pain can sometimes be very visible. Normally those of us with PSA look “fine” even when we are absolutely not, we are here to listen and understand. Do not feel bad about resting when you can, when you need it, take it. If your pain is really bad let people know. Your husband if he is anything like mine feels terrible too. My hubs used to beg me to let him help me. He just couldn’t do anything just touching me made me want to scream. When I got sick he thought I was going to die! Your family loves you and would give anything to take some of your burden. They would feel terrible that you feel guilty, they just want you better. Please believe me when I say there is light at the end of the tunnel. You may struggle in your job find ways to compensate and you will manage better. There are so many ways to juggle life its amazing how well things can be worked out. Changing your way of life doesn’t have to be the end of your way of life. Everyone can pitch in and everyone will be better for it.The children will feel like they helped you, and sometimes you need it! Please take care and remember we are all here to listen.

9

“there is no fear in love, but perfect love, casts out fear”. 1 John 4:18

I pray that you experience God’s perfect love… for you, and your family

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First, let me tell you that you are loved. By so many. I have felt like you more times than not. Then I feel guilty about THAT too. A leave from work may do you some good to relieve the exhaustion if nothing else so that your mind may clear. I am glad you have a support network. So many are going thru this alone. If your mind is telling you that a brief hospital stay is necessary, then possibly it's true. Admitting where you are isn't a sign of weakness or selfishness. It's a gift to you and those who love you. I have been able to do that, and while difficult, a relief to me and those who saw the pain. My spouse was relieved I was in a safe place. Know that where you are is temporary, and it will get better, and you'll be stronger. You have a gift for writing and communicating. That may blossom someday into a whole new career, or who knows what. Keep reaching out. feeling alone doesn't make it so. God bless.

11

this is the exact right place to express these feelings. I can already see the outpouring below. You have a lot of friends here lbeth. If you ever feel like you need to talk to a professional, feel free to call this: 1-800-273-TALK

Sometimes talking to a professional is the best way to do things!

Scott

12

Please take care of yourself lbeth, you are so precious to those around you. You may need to give some TLC to yourself at the moment and don't even consider feeling guilty about it..........you need to be able to care for you too. sending you a hug x

13

I'm so sorry you are struggling right now. I'm someone who can specifically relate as a musician. I have a music ed degree too and am currently scared PSA will effect my ability to play the violin and other instruments. My hands have been hurting and just thinking about it makes me tear up. Traveling and setting up classrooms I'm sure is a HUGE struggle.

I know someone who changed the day of their MTX injections because it was effecting his Monday's too much. I think he went from Friday to Thursday. Just wanted to mention that. He found that moving around the timing of his injections helped put the day he hit the wall over the weekend.

I agree with the Jesus stuff too. I know "cry out to Jesus" and "find strength in Him" can sound so trite but truly, He is who I trust to get me through loosing my musical abilities or whatever lies ahead. He's the only thing I can trust that my life will not go down the tubes if/when my body does.

Please find help when you are feeling suicidal. Wake up your husband. Crawl in bed with your kids. Even at 2 in the morning, you may need some physical connection in the world to keep you connected. You can google suicide hotline if you need immediate help I'm sure.

14

Dear ibeth,

I just read your email and can feel your pain and I know all of us wish we could take the pain away for you. Since that's not possible, please vent and lean on us until this passes. What you are contributing to your music students is influencing them now and forever, as well as your sons. They will all learn what it means to endure from your example, even when you are at the end of your ropes. Your hubby sounds amazing and even though he has his own issues he makes time to love you. You need to find an outlet...singing, playing an instrument, reading, throwing dishes into a large cardboard box helps me get rid of the frustration. I buy super cheap dishes at Goodwill and throw away. Please seek help if you are feeling that you might hurst yourself. Life is worth living even if it means having pain, think of your blessings and count them one by one and it will surprise what the Lord has done for YOU.

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Please seek help!!

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Lbeth, I was also up this morning at 2:30 in pain. Finding this site has helped me in so many ways, knowing I am not losing my mind and there are others who know what I am feeling. My new normal is defiantly different but I am getting use to it and try to keep stress low. Please find someone to talk to, and check back in with us after you get some rest.

17

Don't give up! The fact that you acknowledged you weren't thinking rationally at the end of your post is something to build upon.

18

Lots of love to you! It's great that you called your therapist and vented here - sometimes just talking it out can make a world of difference.

One of the most difficult parts of PsA for me was realizing that the old me is just that - the old me. I won't be going back to being that person again. At first, this was excruciatingly painful to even think about. Now, having allowed "Sporadic Artie" (what my four year old calls PsA) to teach me a lot about LIVING life, slowing down, enjoying the small stuff as well as the big stuff, and being thankful for it all, I don't want to go back to who I was before the dramatic changes PsA presented in my life over the past few years.

I guess what I'm trying to say is that it gets better. Once you can find your way to a place where you can begin to accept where you are in life and realize who you are, in essence, is still the same, even if the manifestation of your being is a bit different, things will start to improve.

19

Nym you are so right…PsA has given me the time and the inclination to “smell the roses”. Once you can accept the you with PsA and love that person too, life begins again. You will get there lbeth, it’s a hard road but we are here to give each other help along the way…get yourself well, heal your emotional hurt, your skin will improve too as the stress leaves you. X

20

also i found that once i got my balance i started using Melatonin to help me sleep no prescription needed, all natural and wasn’t just another drug to get into my system. Good thoughts Ibeth and remember we are all here to help ya through it