Rug Pulled Out From Under Me

By mlc470

2 min read

It has been a long time since I’ve written a post, I feel I’m in constant turmoil and life keeps throwing more at me. I will forewarn you that this is not a feel good post, you may already be feeling down to scroll to another.

I was diagnosed with fibromyalgia and osteoarthritis many years ago. I always knew there was more, I was diagnosed with rheumatoid arthritis (RA) over 5 years ago and officially diagnosed with psoriatic arthritis 2 years ago. Now over the past year, my skin rashes have been diagnosed as psoriasis.

Experiencing loss with psoriatic arthritis

My health has declined significantly over the past 2 years, within the past year, I’ve lost my home (I live with my daughter and her boyfriend in a small 2 bedroom apt) blessed she took me in. I’ve lost my job, inability to do what I was doing. Had to give up my car, due to high payments. Lost most of my ability to walk. I’m having a MRI of my spine next week do to nerve and or muscle issues from the advisement of my neurologist. Now on unemployment looking to work from home, so far nothing has panned out.

I finally decided to move forward and speak to a therapist, starting in a couple weeks. Not sure if this was a wise decision, I thought it was. After reading the intake therapist’s report, we had a zoom call, she made me sound horrific. I will wait though and see how it goes with the therapist.

I have started my possibly 7th biologic, it’s been 2 months and I know patience is important. At the same time, trying to taper down on my prednisone, which is bringing me to my knees.

Struggling to pull myself back up

I keep telling myself that this next month or this coming year things will get better... My life’s motto has been "What kicks you down will make you stronger." I no longer live by that motto, nor do I have a new one yet. Possibly soon.

I’m sure you’ve all felt this way too, but every time I start to think something good will happen, the rug gets pulled out from under me and I’m struggling to pull myself back up.

Do you have a story about living with psoriatic arthritis to share too?

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Diane T Moderator & Contributor
Hello <inline-mention username="mlc470" user-id="3304462"/> , When I started reading your story; I was thinking did I write this? Nobody else might not understand, but I 100% get it. I got psoriatic disease in 1963 and my list keeps growing with illness. My worst diagnosis has come in the last 20 years, but this is not about me. Let's talk. I was against talking to a therapist for years. I was like, you don't have a clue what my life is about. I switch 3 times. For me, I had to find the right fit. I don't want anyone preaching at me. I did find a good one and haven't looked back. I am 65 now and I try and live every day as this is my last day on earth. Don't get me wrong, we all have bad days; sometimes I can't get out of bed. Keep that motto -"what kicks you down will make you stronger." This is so true and it does work. We are not going to have great days, every day, but we will have great days. My father will be 90 in March and he is in better health than me. Every time I see him he tells me to live as long as I can and die when I can't help it. As you know, life will kick you when you are down, we just need to get back up. I am so sorry you have gone through so much in the past couple of years. It's good that you have family there for you. You don't have to go at this alone. Let us know how you are doing. We are all in this together.
1. mlc470 Member
 Hi <inline-mention username="Diane T" user-id="3306420"/> , hope you are doing well and had an enjoyable Thanksgiving . That’s really a wonderful thing to do, you’re almost there! 35! I like the idea of eating a meal counts, in case you don’t want to stay or wanting to move on to the next state. Does Skyrizi help with joint pain? Another 2 months with Cosentyx and I’ll see what’s next. It’s been over 3 months so I’m trying really hard to give it 6. Just to be sure. 
2. Diane T Moderator & Contributor
 Hello <inline-mention username="mlc470" user-id="3304462"/> , We had a great Thanksgiving; just got back from the Bahamas. How was your holiday? Did you eat too much!!! I take Methotrexate along with Skyrizi, so I'm not sure which one is helping with the psoriatic arthritis. I am going to talk to the doctor about getting off of MTX after I'm pain-free. (I hope) I agree with you; give the medication time to work. I believe 6 months is long enough. Do you just take Skyrizi only? Thanks for sharing.
Mary Lynn Member
 <inline-mention username="mlc470" user-id="3304462"/> , you say in your intro that yours is not a "feel good" post. And you know what, that is okay. We come here to be real. We come here on the days or weeks or months that its hard to find a smile. We don't have to fake it here. You surely have lost a lot in the past year. Health struggles alone are enough. But you have lost so much due to those struggles. Your rheumatologist is right. We all deal with grief. But you are grieving more than one loss - your home, your job and your car. Wow. You are grieving the life you once knew. Please be extra patient with yourself. It takes energy to grieve. And honestly, its OK to be selfish and say, "I am going to tend to me right now." Wishing you some sparks of hope in the days ahead. 
1. ClairG Moderator & Contributor
 <inline-mention username="Mary Lynn" user-id="4513411"/> Gosh, you have really been through it. How have you recovered from the surgery? You sure do bring kindness, thank you for that. gentle hugs. _ Clair (team member)
2. ClairG Moderator & Contributor
 <inline-mention username="mlc470" user-id="3304462"/> I am sending you a gentle hug, It is so natural to be feeling like this, and honestly I think it is something we can only get when we have lived it. You are allowed to feel grateful while mourning your previous life. Those feelings often co-exist together. We are here for you, every step of the way. - Clair ( team member)
mlc470 Member
Melanie is my name by the way, I tried to change it from my email name but couldn’t figure it out. I wanted to mention, last night I was laying in my bed about to watch something on TV. My channel was on YouTube. There was a guy who was on it, I’d never seen before. He was a doctor of psychiatry. Not something I’d searched for or watched before. He was talking about why we shut down sometimes and how to get out of it. There I was remote in hand, feeling this way. I watched him and a couple other ones he had posted. It blew me away that this happened to be there at that moment. I really needed to hear his words.
1. ClairG Moderator & Contributor
 <inline-mention username="Mary Lynn" user-id="4513411"/> , We share a name, My second name is Mary, I was named after my grandmother. How are you managing with your posa at the moment? May something beautiful come your way too, Clair (team member)
2. ClairG Moderator & Contributor
 <inline-mention username="mlc470" user-id="3304462"/> Melanie, If you would like to change your user name, and or your profile picture, here is the link: <a href='https://psoriatic-arthritis.com/profile/edit' target='_blank'>https://psoriatic-arthritis.com/profile/edit</a> Sometimes the message gets through to us where we are. Sending you a gentle hug for your day. -Clair, ( Team Member)
mlc470 Member
Thank you, I will do that.
1. Vickie Wilkerson Moderator & Contributor
 You have had a lot come your way in a short period of time <inline-mention username="mlc470" user-id="3304462"/> it's no wonder you are feeling like the rug has been pulled out from under you. Psoriatic arthritis is enough to deal with without all the other things happening. Anyone would feel pulled down. You have a community here that cares and willing to rally around you when you feel like you cannot pull yourself up. Have you considered filing for disability? That might be a solution. Vickie W., Team Member
mlc470 Member
Ho <inline-mention username="Vickie Wilkerson" user-id="3316344"/> , I have considered disability. I’m single and just found out a week ago that my daughter is moving, and I will have to find my own place. From what I understand is you can’t be working if you’re filing for disability. Which currently I’m not, but I’m getting a wee bit from unemployment because the state said as long as I can do something I am considered capable of working. She asked if I’m able to answer phones, I thought well sure. It seems all the WFH jobs also need typing. I can try, but having RA in my hands along with the arthritis you get in your thumbs (can’t remember the name) I am not so sure. I think I need to make an appointment with someone who can help. I am open to suggestions and advice to figure out what I can do. When I lost my last place, I called every place I could think of to help. I realized that for single older people there doesn’t seem to be anything, I might be wrong. 🙏 I hope I am. I would call, tell me situation, was told they couldn’t help but would give me a couple more places to try and would be told the same thing. We can’t help. I have family that is capable of helping, but choose not to. My entire life up until I got sick, you could ask me for anything and if I could do it I would. Vickie if you have any ideas on disability I would be very grateful.
Diane T Moderator & Contributor
Hello <inline-mention username="mlc470" user-id="3304462"/> , just checking in to see how you are doing. How was your holiday? Did you ever look into the disability. We would love to hear from you. Diane (Team Member)
mlc470 Member
Hi <inline-mention username="Diane T" user-id="3306420"/> , sorry again for the late response. My holidays were alright. I did sign up to get disability, beginning of December. I’m supposed to get an answer by April. I hope I’m approved and don’t have to appeal, but if I do then I will. I wanted to ask does Skyrizi help with the pain too? I hope you are doing well, I feel like I’m always needing to get stuff medically and paperwork ect done but I also don’t get it all done quickly. There are so many appointments, medicines and things to do I feel very overwhelmed. I have found a wonderful therapist and that’s going great!! I’m so thankful for your words of encouragement on that. Thank you! I talked to a pain management doctor, what a mistake. She wanted me to talk to their psychologist, I did that through a call today. Him and I decided one person ( my other therapist is enough) but he did a quick evaluation since we had the appointment. I’ve been grieving for the person I used to be and I can’t seem to accept that that person isn’t here anymore. I have to say he gave me some of the best advice I have ever heard so far from all my docs. I’m just thinking it might help someone else too. I haven’t done it yet but I’m going to try. He said the amount of grief I have is tremendous, along with my illnesses and not doing what I used, I’m also dealing with loss of job, home, and car in the past several months. He said think of my grief as if I had lost someone in my life. I wouldn’t want to lose those joyous moments, memories and the love for them. The things and activities I did that I can no longer do ( hike, Krav Maga, MMA, salsa dancing) I’ve put those things completely out of my life and try to keep them out of my head. I feel so sad when I think of my past. He told me not to do this, but to think of them like a person. Even though I will not do those things again, try to incorporate them into my life. Watch MMA on TV, action movies with great action scenes. Bruce Lee, Jackie Chan come to mind. Little by like bring some form of those things I lost back in my life to enjoy. Listen to salsa music, maybe have my son take me on a trail just to take in the air and sights. This somehow made me think how I never thought of this in the first place. Instead of stuffing it down and out. So I hope that made sense, sometimes I ramble and it doesn’t. But maybe that could help someone else too, I hope and think it will help me. It’ll take time, I’ve shut it out for a long time. I’ve also never gotten over this grieving process and couldn’t understand why. Oh my this is very long and completely off target of you checking in and saying hi. I just wonder how many of us leave the old us behind or try to embrace the past and move forward in different ways. 
1. CathyD Moderator
 Hey <inline-mention username="mlc470" user-id="3304462"/>, I know your comment was for <inline-mention username="Diane T" user-id="3306420"/>, but I wanted to let you know that this deeply resonated with me. I also locked away and avoided all memories (and things that might trigger those memories) of hobbies and experiences from my pre-PsA life. It just feels too painful to think about all of the things that I can't do anymore. I think that's understandable and it was a necessary coping mechanism at one time or another... I will definitely be trying to look at it all from a different perspective now, having read your comment, and try to find ways that I can still connect with those things that I used to enjoy. I think this will be a challenge but hopefully it'll be a healing experience. Will you keep us updated on how you get on with it? Thank you so much for taking the time to share here. Sending the biggest hug! -Catherine, Community Moderator
mlc470 Member
<inline-mention username="CathyD" user-id="3278598"/> , hi yes I will definitely! Please let me know how you do too please! I will take one day at a time and take a small step. In theory it makes sense, but you’re correct it’s self preservation in the beginning . I’m hoping to heal and I want to remember with joy who I was. If it seems to much I will slow down. Hugs for you Catherine.
1. mlc470 Member
 <inline-mention username="CathyD" user-id="3278598"/> , hi. I hope this message doesn’t get to you 2x. I was writing and it disappeared. Probably something I accidentally did. lol I’m hoping you are doing well, and hope you are finding some joy in looking in the past and maybe incorporating in someway those things you once did and now can’t. My process is going slow, it’s not as easy as I thought it would be. But that’s alright, I will keep taking baby steps. I find it hard to see who I was, and the person I am now. Even writing this I get emotional, but I’m determined to keep trying to do something. Somehow bring the love of what I did into my present life. I think I’m going in the right direction, the past 6 months have been a very dark place for me. I use to be such a positive thinker, believing things get better and happen for a reason. The past couple of weeks I emotionally feel a weight is lifting. My attitude is changing for the positive. I thank everyone on this support forum, I think it has helped so much. Many things I’ve said here I could never say to family. Hugs to everyone. 🤗
2. CathyD Moderator
 Hi <inline-mention username="mlc470" user-id="3304462"/>, lovely to hear from you. I have been thinking of you and wondering how you've been getting on. I have to say I am still really struggling to connect with/remember things that I used to love/do. At the moment it doesn't even feel like that was the same person. I'm sure you can relate. I understand so well what you mean about feeling emotional just writing about this. I think taking baby steps is definitely the way to go with this process. It gives me hope to hear that a weight is lifting for you emotionally. That's got to be a positive, and is hopefully a good sign for moving forward. I'm so glad that you're finding the community here helpful. I'm sure I'm not the only person who's found your own comments extremely beneficial and enlightening. Hoping by the next time we speak we may have both made some progress (although if we haven't, that's okay!). Sending lots of love! -Catherine, Community Moderator
mlc470 Member
Hi <inline-mention username="Diane T" user-id="3306420"/> , I understand that feeling well. You’ve been living with this a longtime, you’ve got to be one of the strongest people I know. There are days I’ve thought I’d die from pain, I’m on meds to help with the pain. But they only do so much especially after longtime use. I’m almost 54, been living with this for around 15 years. When I was younger I had other health issues, but this with RA, and the other list of things days are very hard. I can’t imagine doing this another 10 years, but I’m sure I will be. When I see family or doctors, I’d get the similar response. “You look like you’re feeling good today.” It’s funny how we put on our happy face to those around us. But why would we want them to see how we really feel? Sometimes I wish they did, so they would REALLY understand how we feel. But only for a day. I hope you are doing well, and feeling okay. I know you mentioned you had started a new med, are you still seeing good results? I’d love to hear about it.
Diane T Moderator & Contributor
Hello <inline-mention username="mlc470" user-id="3304462"/> , It's nice to hear from you. The pain is the worst. There have been times when I have cried myself to sleep. I have said so many times in my life, I just can't do this anymore. We are stronger than we think. Let's just take it one day at a time. My new medication is doing well for my PsO, but not much for the PsA. They had added in Methotrexate but had to stop taking it because I was getting infections. I see my dermatologist and rheumatologist next month to see what can be done. Never a dull moment - right? You hang in there. My father who will be 90 next month always says - trouble doesn't last always. We need to talk to him. LOL! How do you get family to understand how we "really" feel? Diane (Team Member)

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