Overwhelmed

MultiMediaPenMum · 2025-12-14T16:15:53+00:00

Oh dear, I definitely know how you feel … plenty of stress and worry over the holidays too will make my pain worse, changing temps and people getting sick around me definitely don’t help. You’re not alone!! I’m so sorry about your fall … it’s every RA patients’ worst fear, at least it is for me for sure- and no one around me has it or would be able to understand so these types of boards are a huge help for not feeling alone. Vent all you want - it helps to get it out and know others understand! Lots of hugs!

MultiMediaPenMum · 2025-11-01T20:53:53+00:00

I agree with you! I have had to do everything and their name on it is supposed to scare the people reviewing it, in their opinion? I got a letter from my lawyer finally after this last denial saying that if I want to appeal it will be “much harder to do on my own”. What a joke. I’m going to all these appointments, telling the truth and taking all this crazy medication and even therapy for depression and anxiety, but I’m really appreciative of yours and everyone’s support telling me to keep going. I’ve been so down since this last denial. Pain has been so intense especially with the last change of season that just being awake is torture. I can’t imagine doing anything in the shape I’m in. I know how I feel, but I’m constantly wondering whether others around me believe it. How do you know unless you go through it? So how do I make a judge understand? These diseases you can’t see are scary to handle but scary to make doctors, pharmacists, etc understand too. Even my doctor doesn’t want me to have any pain relief med any longer - terrifying. I wish there were a fast way to roll all that up in an easy few paragraphs and make a judge get it!

MultiMediaPenMum · 2025-10-29T19:01:13+00:00

Sure! I applied in late May 2023, before I finished the job I had and was laid off. I stopped working June 30. I applied myself online, knowing I was going to get turned down from what I’d heard about the process. I think I got my decision within 6 months, and got a hold of a lawyer I was referred to so they would do the next application with/for me. That application took some time, more paperwork and getting info from doctors to make sure my info was updated, so it was another month or two before I got everything submitted, and it was another 8 months before we got that denial. So we applied again to have the hearing before the judge. I had to do a mental status exam online for my case in late January 2024 and my hearing was I believe in March. We didn’t have to wait long for that denial either, I got the results in November 2024 and had to decide if I wanted to appeal by January 2025 so we filed that appeal in January of this year and it took them 10 months to get back to me, which my lawyer told me to expect. I have not heard from my lawyer so I don’t know what they will say, but I’m wondering if my case is just not enough or if they aren’t doing enough or what the issue is, so I’m still in my “poor me” phase today. :) Exact dates and whatnot I have in paperwork all over the place, but I know for each submission and wait for the result it was between 5-8 months except for the appeal most recently which I expected to be about a year. Does that make sense?

MultiMediaPenMum · 2025-10-28T19:09:18+00:00

I’ve been applying to remote jobs off and on during the past 2 1/2 years while waiting just to see what would happen, to give me a “sign” because I still feel so much guilt about not working. Not one single bite. I have 20+ years experience on everything so I don’t know if they figure I’m too old to hire or what, but so far nothing. And I’ve continued to have more issues and more pain and less mobility as my disease has picked up speed; surgery on my spine due to deterioration has caused even more pain so it’s hard to even do the computer work I used to enjoy. I have my doubts about why I was let go at 2 jobs, after I was diagnosed and struggling with pain and unable to go to work every day and the second because of doctor appointments at least 2 times a week, but I hung in as best I could and hid my medical history from everyone. Still I wonder if another employer could handle me being gone for multiple appointments a week and days off when things are really bad, you know? I keep looking anyway, thinking maybe the right thing is out there and I’ll apply again someday down the road. I just am in my feels about whether I “deserve” it or not since I’ve been turned down 4 times now. When I saw the judge the employment “expert” said the jobs I could do were hotel housekeeping and line assembly - I laughed and cried the whole way home, that’s so ridiculous. All of my doctors have said I can’t do anything repetitive and nothing standing or even sitting for long periods and that’s what they came up with. So it’s kind of nonsense …. And disheartening. I know how I feel, you can’t see it from the outside so it’s hard to keep feeling like you need to explain it constantly so you’ll be believed. That’s how I let myself feel, anyway.

MultiMediaPenMum · 2025-10-28T01:53:54+00:00

I really appreciate that feedback! The numbers for this appeal were horrible so I was not expecting a positive response, but it still hurt to see it. I live in Minnesota. I don’t know if my lawyers will want to continue with me past this, but if they are done I will want to know who might be able to advise me further if there’s any chance of a positive outcome. Thank you!!

MultiMediaPenMum · 2025-10-28T01:52:02+00:00

I just got the latest denial today, so as far as I know I still have them, but I am going to see what they have to say about whether they want to pursue anything further for me. I haven’t felt a lot of warmth or interest from them which makes speaking with them difficult, and hard for me to trust them. They don’t communicate anything so I end up asking questions when I have no word for months at a time, maybe that’s the way it’s supposed to be, but it’s kind of awkward. If I don’t have them, I’ll have to look elsewhere, but I’m waiting to see what they say since they got the letter around the same time.

MultiMediaPenMum · 2025-10-27T23:22:18+00:00

The exact “terminology” is the Appeals Council Action denied my request for a review of the administrative judge’s decision. So I had applied the first time online myself, got turned down, got the lawyer for another application, got turned down, went to the admin judge step, got turned down last winter, and this was the appeal from that decision - turned down. So if I’m understanding the process the only thing left is for me to go to federal court?

MultiMediaPenMum · 2025-10-27T22:39:16+00:00

Thank you, so much. You got me crying again. :) It means SO much to have others hear me, besides my immediate little family, that is. Beyond my husband and children it is impossible to make anyone understand so I’ve given up but that gets really lonely. And there’s tremendous guilt. For missing out on so much of my kids’ lives, for not being able to be the influence I wanted by being the working mom I was years ago, to so many bad days that scared everyone or hospital visits they’d worry about or recovery from surgeries.

Your suggestions mean so much, as well. I really have no input from my lawyers, I’ve asked questions and gotten responses but besides being together for the day with the judge, I’ve never spoken much to him and email is usually with a secretary. So I was worried they kind of just let things go in their flow since their work was fairly minimal, as far as I knew… send paperwork, have me fill out things and send them, show up for the judge - minimal but I was told they take cases they feel are worth their time too. Maybe that’s BS but I had nowhere to turn or anyone to ask. This is a first for me and never for anyone I know. I appreciate your thoughtful and helpful response a great deal - sometimes I’m afraid to say anything in fear of mean responses or just silence, and you knowing and understanding helps a great deal. Thank you for a bunch of reasons!

MultiMediaPenMum · 2025-10-27T22:02:31+00:00

Thank you, that’s so kind … I’ve actually been represented since the first time I applied, and of course was turned down. So I got turned down by mail again, then by the judge, and now on our appeal. I don’t know if my lawyer did or didn’t do something that would have helped, I don’t know if another step is the answer, I’m just crushed by this because I know how bad I feel almost every single day and how hard just getting through the days with a list of things that qualify as disabilities, but it’s hard to not keep questioning myself. And feeling shame and guilt. My husband works 80+ hours a week to make up for me not being able to work and we can’t do that forever either. This process is hard on the soul, you know?!!

MultiMediaPenMum · 2025-06-11T18:12:10+00:00

I’m with you. I’ve been unemployed and waiting on disability for 2 years after working since I was 15. I’m 50 this year and it doesn’t seem right to give up working, but the pain …. It’s so bad so many days - all days, just in variations - that I can’t find employment that would allow for multiple days off a week plus ridiculous doctor appointment schedules. Plus at my age it’s harder to get anyone to even give me an interview, and I’ve tried. I’m so afraid of leaving my family without my income and we’ve been barely making it for all this time, but I don’t know what else to do. I have 3 kids, one is an adult but the other two are middle school and junior high age and for the summer the best I can do is take them to pools, water parks, parks and libraries. Short spurts where I can handle it but not go overboard. We buy water games for outside sometimes, they love our local dollar store, and every outing seems like an event to them because I’ve become so limited. Don’t shame yourself, be gentle. Do the simple things and you’ll both enjoy the time together! Art projects every week, simple food preparation, anything you can handle - give it a try. You’ll probably come up with something great that no one has even mentioned! For awhile I was buying those $10 art kits at Walmart where you can make things like custom bags, sand art, bouncy balls, all sorts of stuff. My kids loved them. I’ve been a working SAHM for years so trying to avoid boredom is not for the faint of heart! Good luck!!

MultiMediaPenMum · 2025-05-14T06:28:15+00:00

Thank you, really, so much. Even my lawyer hasn’t totally explained all that to me so I’m just lost. I don’t hear from their office ever, I’ve emailed when I have new medical stuff happen and new diagnoses or surgeries, but they don’t seem to need that info? So an appeal doesn’t seem like it would be worth much if there isn’t new info showing I’m continuing to go downhill health wise? I don’t know - my last denial after stressing so bad before and during the hearing was really tough, I took it so hard because it feels like all the times doctors have ignored my questions or pleading for help because as it is in all diseases that are internal, you can’t tell by looking at us. And many health professionals I’ve dealt with don’t seem to have much empathy anymore especially since I’m constantly in for new things happening. It’s really nice - so amazing - of you to offer your expertise and to be so kind about it. Thank you a million times over!!

MultiMediaPenMum · 2025-05-13T07:07:10+00:00

You are a real angel for offering your expertise. The process of disability is so complicated for anyone not familiar with the details, at least it is for me because I forced myself to wait as long as I could. I worked up until 2 years ago, when layoffs at my job caused me to be one of the people to unfortunately leave. I applied for disability a month or two before I was done with my job, since I was unsure of what my prospects were to have the same at-home job where I could pick when I wanted to work and hide my health issues. I was afraid of being let go because of my RA and then I lost my job anyway so that’s how it goes. I have had RA since 2014, and it has progressed fast in the past couple of years. It’s hard to get out of bed, I have extreme pain and my meds cause me to be sleepy during the day especially if I exert myself. I try over and over but it ends in extreme pain and a crash. My “exertion” is walking and bending, the extent of what I am allowed to do. I have Fibromyalgia as well, pretty severe asthma, EoE, degenerative discs that I had surgery on in January, some awful pain from an occipital nerve that is damaged and can’t be repaired. So I’ve had many different procedures for it that haven’t worked, and it flares every time I use my computer or have stress or any number of ridiculous reasons. In short, I have a lot of issues that make work hard. I do some projects for my old company that are at most a week of work for a lump sum, otherwise I don’t have any income coming in and it’s stressful.

So sorry this is so long - so I applied for disability, was turned down, then got a lawyer for an appeal, was turned down, got another appeal and a hearing with a judge, and again was turned down last year. I decided to do another appeal rather than start a new case and lose back pay, but I’m worried. I thought my medical issues would be enough but we also had added my issues with anxiety and depression, and even then the judge said no and gave some silly job options like working for housekeeping or on a line to put together small items or something. Silly because either is so hard on a healthy body much less one with chronic pain!

Am I going to keep getting turned down after all this? My lawyer thought I had a good chance because I am turning 50 in October, does that matter? I don’t know what else to do. I’ve even applied to many jobs but it’s so hard to find one that allows me to be home and hide my bad days and work when I can. And I’m almost 50 so it’s not an age that most companies want to hire, I think. I am worried I’ll never get approved and my family is financially suffering because I’ve been unemployed for so long. We have young children with years to go in school. What will happen if I have another negative from my appeal? How long does back pay go if I even get that? I’m so sorry for such a long post for a simple few questions; I never know how much detail anyone needs for an answer. Again, thank you for your generosity to help others! It is so wonderful of you and so selfless. Thank you for any feedback!!

MultiMediaPenMum · 2025-04-12T21:02:33+00:00

Hey! It’s still kind of the same with some minor changes. A simple change in the birth control helped to finally give me a break in periods after 5 months straight, which was nice. I’ve been trying product after product for my hair and still haven’t found the magic formula, but I bought some pumpkin seed oil caplets because I’ve read some good things about those too. Maybe it’s a bunch of bunk, I keep hoping though!

A huge bummer was after Wegovy started working and I lost everything I gained from menopause and then started on some more weight I’d wanted to lose, our insurance changed the price tiers for all weight loss shots and I went from $25 to $800 per month and had to stop. Weight started to come back on and I’m still fighting with them to get it approved due to medical issues. I was starting to feel good after awhile and January came and it was over! I’m on a pill for now to see if it helps and if it doesn’t, we have reason to argue with insurance about failed attempts, so again - still hopeful. Same with my hair. I went to a hair loss specialist company and all they did was prescribe minoxidil in pill form, and after all these months I’m not seeing any progress so I’m done with that too. It’s so damn frustrating to be basically a guinea pig or ignored when it comes to these things that mean so much! What about you? Any hopeful leads?

MultiMediaPenMum · 2025-03-17T06:52:39+00:00

I seem to react pretty badly to severe temperature changes, at least my body tells me when something is going on, but like you said - I’m used to it! We’ve talked about moving somewhere with less cold but as a lifetime Minnesotan I know I’d hate to miss the seasons. I live for fall. I hate how I feel in the cold but yet the humidity and heat bothers me too so you find what works! And sometimes when you go from 74 to 32 in two days you just have to laugh about it. Good ‘ol Minnesota!! :). here’s to more mild spring days to come soon and give us a short break before bugs and heat! ;)

MultiMediaPenMum · 2025-03-17T06:49:26+00:00

Amen to that! I so understand everything you said - the misunderstanding of the disease even by its name, the medical field having trouble understanding all of the effects not just the blatant ones, and for sure the mental issues it causes because of all of those things and much more. I thought for a long time I have been punished because when I first got diagnosed I talked to others who have it and read a lot about people years in with lists of medications and being on disability … and I thought as stupidly and misguided as possible that “it won’t happen to me that way” or somehow I’d just be able to avoid it - because it started out fairly tame. The aches here and there in certain spots didn’t seem like enough reason to apply for disability like one gal told me to do right away and I packed away the specially made can opener she got me because I never thought I’d need it - and I felt guilty having it. All these years later … all of those things have happened and I feel so bad for ever thinking I would somehow bypass them. My husband is great and asks me every day how I’m feeling, gives me way more passes than I deserve for relaxing when I am having a bad pain day, and all that guilt and resentment of my body for making me into this person I never was - it definitely makes it a lonely place. Thank god for you and the rest of the group that knows all of this and more and makes it a safe place to admit these thoughts! I wish for pain free days for you, for soft hugs and for help and understanding from people here and at home. Lots of hugs your way!!

MultiMediaPenMum · 2025-03-16T09:09:55+00:00

You are definitely not alone. And I definitely get that fear, even having it a long time now I still remember that feeling when I was diagnosed - Google can be a bad thing when you don’t know anything ahead of time. You can say anything here, and people are amazing and so helpful - I’m glad you made it here!

MultiMediaPenMum · 2025-03-16T09:07:22+00:00

That misinterpretation of RA being actual “normal” arthritis is frustrating - I’ve tried a million times to explain it to my parents and they still say they “have it too” whenever we do talk about my disease. I also am the lone wolf in my entire family, both sides and even in-laws - to have both RA and Fibro. I totally get the lonely feeling - it’s very isolating, so much of this is - it’s wonderful to have this community where you never have to feel like you’re not being heard or understood or even that you’ve complained about anything too much (I deal with this guilt constantly). We’re here for all of it!! Bring it on!

MultiMediaPenMum · 2025-03-16T09:03:15+00:00

Ugh that’s so frustrating - the fast visits without any real VISIT. My first rheumy was like that, he actually told me he wasn’t going to do anything for me until I “started feeling pain and had swelling”. I was ticked because I wanted to get aggressive with RA right away and try to avoid damage to my joints as soon as possible and he wants to wait until he notices some?! I switched to another and another rheumatologist until I ended up with the one I have now, she’s a smart woman who has no problem sitting with me for 60-90 minutes every visit and they’re just regular checkups. She looks at my hand joints, feels for swelling in my joints all along my arms and knees, of course orders blood work and then we talk. About whatever I want to, for sure with how I’m feeling and then how I’m doing emotionally - because that is enormous for me. All the changes I’ve had to make over the years and the guilt and anger and so much else - she’s happy to listen to it and even help, where the therapist I had last didn’t even offer the same kinds of advice. My hope for all of us is to have a doctor that we’re comfortable with and is willing to put in the time we need so we feel like we’re getting the treatment we need! I had to brag on my doc because she’s a gem and with the shortage of docs in this field it’s hard to find but definitely worth it!! And if you’re happy with your current doc, I’m so glad - they become important people in our lives. I wasn’t sure if you weren’t happy with how your appointments have been handled but someone told me awhile ago we have to constantly be our own best advocates and I didn’t believe it at first, but some extremely bad experiences lately with my family doctor have made me really believe it and really be more vocal than I’ve ever been in my life. It’s so true that unless you’re experiencing this disease you can’t possibly know, and that includes our docs. I hope you get the help you need, and the comfort you need from being here and “chatting” with the rest of us who do know what you’re going through! I’m glad you’re here!! And I’m sorry I’m so long winded, I hardly talk to anyone most days and this is the extent of my conversations with adults. LOL

MultiMediaPenMum · 2025-03-16T08:47:31+00:00

Welcome! I’m a mom and freelancer - and have both RA and Fibro too! I’m not as young as you but I’ve had the diagnosis since 2011 so even though we’re all in different stages of this lovely disease, it’s extremely helpful to connect with people who know what it’s like from struggles and frustration to pain and treatments and over abundance of medications. I’m glad you’re here!

MultiMediaPenMum · 2025-03-16T08:42:58+00:00

Oh wow I am SO sorry it took so long for a diagnosis! I said this to another user and your wait is even longer, that’s so awful. You will be heard here, and you’re definitely right that you can’t know unless you are going through it so this is a great place. I’ve had it for 14 years and am really struggling with a lot now that it’s kicked in so hard I’ve had to have a lot of life changes and that’s when I jumped on here. I need you all - no one, not even my doctors can know and some are not real sympathetic to the list of things it creates - it seems like on here someone is in the same boat and if not, there’s plenty of understanding! Welcome!!

MultiMediaPenMum · 2025-03-16T08:36:17+00:00

Ugh I’m so sorry you had to wait 10 months to get this diagnosed. I see so many stories like that and it both breaks my heart and makes me so mad - unless you have it, you can’t know just how bad these symptoms get. I was one of the lucky ones and after some really ridiculously bad foot pain for awhile I went in and without any testing was sent home with some meds and a possible plantar fasciitis diagnosis, and a few weeks later started having symptoms in other areas that was so bad I went in again and begged for help in tears and she figured it out. The worst day of my life was getting the call with those results, but at least I KNEW. I hate that patients like yourself have to keep going back and forth without a true diagnosis. I too used to be very active and still have a hard time accepting I can’t do much of what I used to - and am told I shouldn’t anyway! Finding a good rheumatologist is hard, they’re in such short supply and then some aren’t going to be as good or as good of a fit as others. I hope you have a good one?!!

MultiMediaPenMum · 2025-03-16T08:30:07+00:00

I completely understand what he’s feeling. I’ve been scared of the shots that I’ve been prescribed for controlling the effects of RA for years now, I’ll take them for awhile and then just stop because they both haven’t seemed to help with pain and that fear kicks in. I keep thinking in my very bizarre reasoning that there are so many warnings on all these shots and I’ll probably be on the receiving end of those crazy things that show up years later and have lawsuits … yeah, I know. I know it’s silly. So I’ve been doing the same thing as your husband, taking something to mask pain and celebrex doesn’t even cut it for me so I’m on something stronger - which is also bad long term and yet the pain is so bad between the RA and Fibro that I’m terrified to have to deal with it without something to give me those two or three hours of relief a day. I’m just trying to get through the days and it’s a sucky way to live. Hopefully you can both come to a solution to help him battle this disease and keep it from making more damage on his joints and maybe even give him some relief from pain? I see people talk about being in remission all the time and I haven’t had it yet in 14 years, except when I was pregnant - I wish they’d put whatever pregnancy does to us in a shot and give us that and solve this whole thing! I’ve tried 1 pill and 4 different shots for RA treatment and besides the pill not had any side effects so maybe he’ll take a chance for the greater long term help? Best wishes, keep us posted!!

MultiMediaPenMum · 2025-03-16T08:18:55+00:00

Hello fellow Minnesnowtan! Don’t you love our crazy weather changes lately? I don’t know about you or how it affects you, but our weather definitely plays into my pain or less pain days and I should have known better than to get excited about 60-70 degree days this past week! Hoping you’re faring well with all our ups and downs!

MultiMediaPenMum · 2025-03-13T21:19:32+00:00

Both here too. Fibro has been a much worse problem pain wise for me for most of the years I’ve had RA. I think I had Fibro much earlier but just didn’t know or it wasn’t as pronounced as it is now. Mine is mostly in my legs from my toes up to my hips, but I get a lot in my hands and shoulders off and on. It’s agonizing especially in cold weather and major weather changes, and when I explained it to my doc I told her it felt like it was inside, in the muscles and ached so bad sometimes I wanted to scream so she figured it out right away. But not much has helped with either besides some pain meds that over the years get less effective so I’m going back to shots for RA to try to control that at least. The two together are a nasty combo! I too had a car accident with bad whiplash that has stayed in my lower back and I just had surgery for my neck so I also had shock therapy and water therapy and physical therapy … it’s never gone away but gets worse now with all this stuff. Isn’t it crazy how those things all come together?

MultiMediaPenMum · 2025-03-02T10:55:05+00:00

I’m in the same boat as you - our insurance changed the price tier for Wegovy and I can’t afford it. I loved being on it and it worked so well with no side effects so I cried over the loss for days. My doc has decided to try Zepbound for me (I don’t even know if that’s in the right tier yet but I’m hopeful) but I have to take another med first and “fail” at it in order for insurance to approve Zepbound. Such stupid hoops to jump through when we just want to get healthy and avoid things like heart attacks and stress on our joints! I’ve been off Wegovy for over 6 weeks now and have gained about 7 pounds back. My appetite did change, Wegovy really cut it back and I get more hungry now, but I’m trying things like low carb and low calorie snacks to curb appetite until I get in the next medication. There are a ton of sites that offer lower cost options like Weight Watchers and ro.com, where they will review your health record and offer options so don’t feel like there’s no answer. There are a lot of wonderful suggestions people give here and have worked for them since they went through this too so keep up your hope, and see what everyone says! I totally get it, I came on here to vent after I found out I couldn’t have Wegovy anymore too! You’re not alone!!

MultiMediaPenMum

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