Rock Bottom

Rock BottomEarlier this year, I was in complete crisis mode. Not only was my physical condition rapidly deteriorating–so much so that I started having serious vision problems in addition to my chronic pain and mobility issues–but my emotional state was almost a complete wreck. (I say “almost,” because I would later learn that I would fall more than I ever thought imaginable.)

I decided to ask for help. Even though I was uninsured and unemployed, as I have been for years, I decided to take control of my situation, and to look for a way to gain access to some of the newer–and very expensive–biological therapy treatments for rheumatoid arthritis. I asked readers of this blog to submit reference letters (thanks again to all who did!), I asked medical institutions for financial assistance, I asked family members for money, and I asked friends if they would open up their apartments to me, so that I could stay in New York City for a few months to explore options. Against all odds, I arrived at the lower tip of Manhattan in the middle of March, on a frigid winter morning.

Things were looking up.

Within the next couple of weeks, however, everything started to spin out of control–not only with my body and mind, but also with my life. The doctor who was assigned my case made it clear from day one that he had no interest in helping me (going so far as to, on a follow-up visit, walk out on me and my friend). My long-term Prednisone use had already made me lose the ability to control my thoughts (and was without a doubt heightening my depression), but every attempt to lower my dose–even in very small amounts–made my body go haywire. To make matters even worse, I woke up one day to find that all of the money in my bank account was gone. (With the help of family members, I had budgeted what I’d need to cover my personal expenses…but as soon as this money was transferred into my account, it was taken back out–garnished by the State of California for back taxes.)

The next day, I told my best friend from college–who stood by my side so many times during those months that I was in New York City–that I could not do it anymore. I told her that I was afraid that I was going to kill myself. She tried using her trademark humor (one of the things I love most about her) to cheer me up, but I wasn’t having any of it. I was done. Finito.

She did ultimately convince me, though, to keep on trying. I haven’t worked through all of the challenges I’ve worked through in the past to give up now, I told myself. I had to keep moving forward.

I decided that I would start walking every day, even if it was just for a few minutes. I told myself that I would get to know the city (and the buildings, and the grid, and the urban design) that I fell in love with twenty years ago, when I was a young college student at Columbia University. Even though the crowded sidewalks were absolutely frightening (and the subway system even more so) for a person like myself, who could barely move with the aid of crutches, I made a point to start moving more. I would get through this…I didn’t know how just yet, but at least I was–once again–moving in the right direction.

My physical condition continued to worsen. I was growing pallid. I was constantly shaking. I was sweating through multiple layers of clothes, 24/7. The ‘experts,’ who previously denied that my medicines (methotrexate and prednisone) could be causing such problems, were now accusing me of taking illegal drugs. (You know your world has turned upside down when complete strangers in New York City show more concern than the doctors; right around this time, a guy who I didn’t even know turned to me, as I struggled to walk down the sidewalk, and told me: Hang in there, buddy–everything is going to be okay.)

I had already stepped away from my blog, and from my volunteer work with Show Us Your Hands!, to focus solely on myself…but things still continued to deteriorate. There was very little food that my body could handle, I started developing extreme sensitivities to smells and anything that came in contact with my skin, and the frequency and length of my episodes of blurred vision continued to increase.

One weekend, concerned family members suggested that I travel to California, so that I could take a break from the hustle and bustle of NYC,  and from my constant medical appointments that seemed to be leading me further from, and not closer to, the truth. I agreed that I would get on a flight the next day–right after my morning medical appointment, that was.

The next day, I texted friends and family members to let them know that I would not be going to San Francisco, as planned.

What I *didn’t* tell them was that when I woke up that morning, I felt like I no longer had anything left inside of me. I was empty. I was finished. As I had told my best friend a few weeks earlier, I could in fact no longer do this. I was going to find my out, and I was going to find it that very same day.

As I walked to the subway station, thinking about specific details of how to do something that I hope to never have to think about again, I felt my phone vibrating. It was my husband. He had just received my text, and wanted to know why I was cancelling my trip. I’ll go another day, I told him. And even though I didn’t tell him what was on my mind, I think he knew, because he told me that I needed to immediately go to the airport and catch the next flight out.

I ended up listening to what he told me, instead of  listening to what I was telling myself. I sat in seat 37F (last row middle seat) for the next few hours, and started to marvel at the beauty of being alive, even with the constant challenges that I face. The next day I walked on the beach and breathed in the fresh Pacific air. I told myself that I had reached rock bottom, and needed to declare as much.  I knew that I still had a long uphill climb in front of me, but I also knew that everything was going to be okay.

I was right.

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

92 Comments
92 comments
  1. Millicent says:

    I am so grateful for your husband’s good advice & that you took it. One day at the time …. Life is a precious gift!

  2. Suzanne says:

    You are one of the bravest people I “know” and a constant source of inspiration to myself and my husband. We are blessed to have you in the world.

  3. Jo-Ann says:

    I don’t have RA but I have MG and have been on pred and other meds for ten years. All the side effects and all the pain and the never ending part of it. I have been there done that and it’s funny cuz just this week I told myself you are coming off of pred and walking if it kills you. LOL. We’ll see. baby steps

  4. fridawrites says:

    Your post brought tears to my eyes–I am sorry you have been through so much. I’ve never been on methotrexate, but certainly prednisone can cause the symptoms you describe. I’ve had blurred vision from it–my optometrist said it increased the pressure in my eye. And it can certainly increase depression/give people difficulty thinking. Those side effects are documented. These doctors need to listen to patients.

    With much love to you. You are very strong.

  5. fridawrites says:

    Also rereading and getting chills, because the pallidness/shaking–you can develop adrenal crisis/endocrine problems after being on steroids a while.

  6. Nancy says:

    I’m crying as I read this. So much you talk about I’m experiencing day to day I want so much to see the good. I use to. I’m so blinded by my pain. I hate this. I love reading your posts. Thank you for opening yourself up to so many. You have a special place in my heart.

  7. Michelle says:

    You are so brave to share this. I am so glad you are on the other side and are willing to reveal your journey that I KNOW will inspire others.

  8. Morgan says:

    Thank you for sharing a difficult part of your journey. I know lots of people with chronic issues and pain struggle with depression, and when we talk about it, we are reminded that we are not alone.

  9. Elle says:

    I’m happy you are still here! You, RA Guy, are a great asset and help to all of us who have this disease! Don’t ever give up! That’s my motto and it’s got me through numerous difficulties. We are all with you and share these hard times having RA! Lots of love and good wishes to you!

  10. Kat says:

    You are an amazing man. I have been following you for quite some time now, either here or on Twitter. I remember this time you speak of, and I can understand that feeling you don’t ever want to visit again. I am glad your husband convinced you to get on the plane. We are blessed just having you in this world with us. It took courage to write that blog. Not just to share it with the world, but to relive those feelings. Thank you for sharing, and for trusting our community with your struggles. I am so proud of you and what you are doing. You have inspired me to move more, even when it hurts.

  11. Lisa says:

    RA Guy, I hope we are as much of an inspiration for you as you are for us. I’m sure I’m not alone when I say I’m tired of living with this disease. It’s been so out of control since April and they are “aggressively changing medications” and so far the meds aren’t working. I don’t sleep, can’t eat some days, lost lots of weight and it really wears a person down. The constant doctor appts and vials of blood taken. It’s really hard when your family–and friends–don’t understand, don’t want to and don’t seem to care. I see the eye rolls they don’t think I see. I see and hear the grumblings when I can’t go somewhere. I spend a lot of time alone with my cats for company. I’ve always been very active but the last few years have slowed me down considerably and I’m awaiting a knee replacement whenever the anemia from meds is under control. It’s been 3 years and I’m not holding my breath. Have my thoughts turned to just ending it all? You betcha. I’ve even thought what an out that would be for my family and they wouldn’t have to put up with this disease or ME anymore. Have I tried doing it before? Yep I have, but I didn’t succeed. And I know why now–I have a precious 8 month old grandson who puts a smile on my face every single day that I see his face. To see his face light up when he sees me gives me a reason to go on. I’ll keep fighting for him–because he deserves to have his grandmother in his life–and I deserve to watch my grandson grow up and teach him things only I can teach him. Thank you for not giving up when it would have been so easy to give up. Thank you for being an inspiration. Your perseverance is the reason I decided to keep fighting. And anyone reading my comment who has thought about the same thing—hang in there. It’s not going to be easy but you are worth it.

  12. Lexie says:

    Thank you for sharing this difficult time in your life. I need to tell you that it is difficult for me to read, I am in this on my own living with RA, trapped in this body, shaking and in pain and I really relate…working on finding hope through Jesus.

  13. Christine says:

    You can’t go anywhere. The arthritis community needs and wants you. Your honesty and sharing help so many. You are our RA Guy.

  14. Jennifer says:

    I believe that most of us with chronic illness hit this moment, where the intersection of pain, loss of your old life, and depression, become so intense that we at least imagine an exit. Thank you fir sharing your story. The beauty of rock bottom is that you can only go up. Bless you. May you be free from pain may you be from sorrow, may you be free from danger.

  15. Caryl says:

    I’m so glad you talked to someone on that day even if you didn’t tell him specifically what was going on. (A good husband always knows.) I have had those same feelings albeit for different reasons. One of my brothers helped pull me through it and I also talked to my therapist that I was luckily already seeing. None of us should ever feel alone.

  16. Jessica says:

    That must have been really difficult to share. Alot of people will be so glad you did, it will really help.

  17. Karen says:

    I can certainly understand – all of it! So grateful you are still here with us…you have been such a help, hope and inspiration – in spite of all of you have been through. I know it has been ANYTHING but easy – and I know about hitting the point where you feel just – DONE. We must keep going – if not for ourselves at the time – then for all those we love, and all those whose lives we will touch in the future. Keep fighting, RA Guy! Keep blogging and reaching out as best you can! SO many people care deeply about you…even if you may not know them directly… and you DO MAKE A DIFFERENCE…

  18. Andrea says:

    You were brave as you stared the demon of death in the face. Interventions and signs are always around, you just have to open your eyes.

  19. Tess says:

    You are very brave to share this and I am so grateful you are here. Thanks RA Guy. Sending you positive waves.

  20. Rhonda says:

    Thank you so much for sharing your life with us! I laughed while I read this, only because I and my mother have gone through the same challenges and somehow keep making it through. This is a rough disease and some days I really feel like giving up, but I keep hoping for a better day.

  21. Linda says:

    RA GUY, thank you for sharing your story. I want to live my life as productively as I can. I’ve had to give up so much. We are all in this together…only all of us know the true consequences of “living” with disease.

  22. Monique says:

    You are one of my heroes! Your strength inspires me to keep going. I love you RA Guy! Thanks so much for sharing.

  23. Tina says:

    Thanks for sharing, I knew there was more going on then what you shared with all of us online during your U.S. trip. I am so glad to read about you moving & walking on your big trips because I know you have fought like hell to get where you are .

  24. Terri says:

    Hugs from Australia. I’m hearing you and love your new positivity in your posts. There’s dark days here also….but hell who’s going to paint the house! 1700km from the Qld border and my kids& grandkids……but I’m going to renovate my way back to them& now onto my second house. Maybe one-day when there’s a cure we can all fly to each others country and reminisce about our conditions!!

  25. Hillary says:

    Thank you for sharing this. You never cease to amaze me because of your strength. Your depression just tells me you’ve been strong for too long and something needed to change. Congrats on moving forward, continuing to “live” and improve. You’re an inspiration

  26. Tess says:

    I seem to bounce at the bottom every day. I don’t want to die, but I feel completely alone in the universe and even the doctors don’t care. How do you deal with that? You have someone who loves you, I have no one. Sorry, you brought me to tears, because I know how this feels. Every. Single. Day.

  27. Cheryl says:

    I am taking the same medications you mention & yes they do cause the symptoms you are mentioning & I am working on switching to other things as you are….(WISHING YOU THE BEST!)….Cheryl

  28. Elizabeth says:

    This gave me chills down my back: You vividly painted a picture that would make anyone understand the truth. To be able to show people such a time in your life is something that requires a lot of strength and passion. Bravo, not on the post but your strength to move forward.

  29. Trish says:

    wow, thank you for sharing. It helps to know that I am not the only one who feels so down as to what is the point. So many times I am thinking something like it can’t possibly be related to RA and then in the next day or so you will post something about it and it helps to know you are not alone.

  30. Hails says:

    Hi RA Guy. I have just read this latest blog instalment, and here I am with tears streaming down my face. I can feel myself going towards the depths you have mentioned, and am trying to claw my way out back to ‘normal’. Please continue with all the good you do, it is much appreciated. xx

  31. Sally says:

    Lots of love and compassion to you. I am sure this was very hard to write about. Praying that everyone has access to compassionate, skillful medical care. It is just astounding that you didn’t get that and I am sure there are many others in the same boat. You make a big difference – keep on blogging!

  32. Seeking Solace says:

    Powerful and inspiring. I know that feeling you describe in your post. It takes great courage to pull oneself up. I am proud of you!

  33. Rheumatoid Arthritis Guy says:

    This blog post wasn’t easy to write, but I’m already absolutely grateful that I did.

  34. Leigh says:

    It was impossible not to cry reading your blog. I’ve been to Rock Bottom. Even felt myself returning there on occasion. But I’m doing the best I can under the circumstances, just like everyone else who finds inspiration in you blog.

  35. Carol says:

    I have no words to describe how true and real this post is to me. I am struggling everyday to resist the urge to leave this earth. I hate to admit it but I consider it everyday and for some reason I could see the press my way. The truth is I am very weary. Thank you for sharing your story you don’t know how many people you have convinced to hold on and keep trying.

  36. Mich says:

    I know how you feel never give up! What a sad state in the US. Here a doc would never walk out on you and you can choose any doc you wish. If you don’t have a health plan through work and not enough funds you get meds covered .

  37. Kimberly says:

    Thank you for posting your story. Right around the time I was diagnosed with RA and Fibro, I was in so much constant pain that my mental health was becoming greatly affected as well (on top of the depression and anxiety I already had) and I was at my Rock Bottom. I was able to reach out to friends and keep in mind that then 3 year old nephew would never understand why his beloved Aunt Kim was no longer around. I couldn’t bear the thought of him going through life without me. Thinking of that even now brings tears to my eyes. Rock Bottom sucks! I’m so glad that you managed to make your way out, and hopefully others will find hope in your blog. Keep making progress every day, even if it’s just a little.

  38. Susan Chaplin says:

    VERY inspiring story….and it’s all yours. I have always been an athlete, proud of my body’s strength, and its ability to do things that impressed and amazed others. RA has for sure drastically reduced my athleticism–crumpling and melting several joints and diminishing the solid muscle mass I always took for granted. Noting these sad chamges, my self esteem and self confidence has also shriveled. My RA co-morbid with liver disease I can’t take a lot of the meds, like methotrexate, that reduce RA symptoms. I am, like you, rallying to become more active, and am strict w anti-inflammatory diet. Like you, also, I have often thought to end it all, but again like you I’m backing away from this idea, and moving toward life: MINE!

  39. Kelli says:

    That was so incredibly powerful reading your story. Knowing that someone else has experienced similar events, really helps to know that I’m not alone. Thank you for the courage it took for you to write this

  40. Michele says:

    Now I know that I haven’t reached rock bottom, even if I sometimes feel that way for a short time. It is valuable to learn from those that have. You are an inspiration, thank you.

  41. Mary says:

    Thanks for sharing this. The quest for medical help can often be daunting to even the most educated and assertive patients.

  42. Melissa says:

    You are a constant inspiration to me. While my symptoms are not as severe as yours, I’ve been physically, emotionally and mentally at my breaking point several times over the last year. Your posts give me hope.

  43. Patty says:

    We were reading between the lines and understood you needed our prayers. So thankful you chose to share so others can understand the ups and downs of dealing with autoimmune disease. It’s your story and your journey but we find strength by your sharing. You are AWESOME!

  44. Christy says:

    How horrifying that “expert” medical care let you get to rock bottom and never helped you at all. I’m glad you listened to your husband.

  45. Tammy says:

    You are probably the bravest person I know who is dealing with this awful disease. It is not easy to share this “adventure” but you do so beautifully and I thank you for doing so.

  46. Suzanne says:

    At our lowest time, I remember the horror and helplessness I felt when I heard my husband talking to himself one morning……saying quietly that he would rather be dead than to continue living in that kind of pain. He made it through that, that time has passed. But it has permanently changed the way we look at life. You are an inspiration and courageous beyond words to share this journey. THANK YOU.

  47. Marcia says:

    Wow, what a story! My prayers are with you all who suffer from this horrible disease…including my very brave sister, who lives alone with very little help.

  48. Aggie says:

    I know that feeling of feeling nothing at all inside…just empty…nothing. I think it was almost worse than hurting. It was scary to feel nothing at all…not happy, not sad, not scared, not tired, not anything. I think it was my mind’s way of giving me a break before I broke. But it was still a very strange situation to be in. That was about 10 yrs ago, and I hope to never feel that way again.

  49. Christian says:

    As a new reader to RA guy and a RA patient, you are the voice we have been looking for keep on keeping on and God bless.

  50. Margret says:

    You continue to be an inspiration for so many. Thank you for sharing so very much. It could not have been easy to do this.

  51. Jass Ding says:

    I am not any better but I know I MUST win this battle because RA won’t kill me BUT will cripple me one day sooner or later….so I MUST continue to WIN at all times.

  52. Patricia says:

    Thank you for putting the effort into writing this. I am so grateful for your words. I, too, have been there.

  53. Janet Brown says:

    I feel like you did many times, but somehow someone always set me straight. Many times I just wanted to open a cap on my pills and just dump them into my mouth and swallow as many as I can. But something always stops me. I want to live, most of the time, but there are times where I don’t care one way or another. But reading your story made me think a little more about things, and I decided to keep going and see if I could improve myself. I can barely walk, but I am going to try to take that extra step. There are many things that I will try harder to improve my life. I hope that I am as strong as you and succeed. You keep going and I will too.

  54. abcsofra says:

    Reading this post made my blood pressure go sky high! Damned doctors who are so arrogant that they forget what chronic pain is and how dare they make us feel so small with such heavy burdens to carry. I am betting that Calif. did wonders for you and I am hoping you found some good answers there. And as easy as it is for me to say that you have too much life to take it away, I know that that statement can be so small when the world becomes so dark. (((HUGS))). Can’t wait to read your next post and hoping that you found some answers and a light at the end of the very dark tunnel you found yourself surrounded by.

  55. Nana V says:

    Just thinking of those beautiful pictures of your hike makes me smile! Please share soon your road from this dark place to those majestic mountains.

  56. Tracy says:

    I’m so sorry to hear about what you went through earlier this year. You had mentioned in a previous post what hospital you were going to in NYC – it is the same one I go to, and I was eagerly looking forward to hearing if you were having a better experience there than I was. Your “doctor” sounds like he was absolutely awful. I am not thrilled with mine, but am certainly getting better care there than you got. I hope you will consider reporting your experience to the hospital’s administrators. As your story so poignantly reminds us, when someone is already enduring a great deal of suffering due to an uncontrolled disease state, the compassion (or lack thereof, in your case) they receive from their healthcare providers may very well be the ultimate tipping point with regard to whether that patient moves on and finds someone else to help them get better, or if they give up.
    I’m glad you didn’t give up.

  57. Lynn says:

    I read your story almost a week ago, & I’m ashamed to admit it took me almost a week to comment. It was SO true & emotional I almost couldn’t handle it. My heart goes out to you & what you went through, & I admire you more than you could ever know for sharing your rock bottom story with us. I, too, have RA, & have been through a lot. But I have been SO spoiled with insurance, medicine, a rheumatologist who believes me, etc. I just can’t imagine going through this disease AND having to fight adversity with medical doctors or insurance AND finances on top of it. People call me strong & an inspiration, but you have humbled me beyond words. I wish you every blessing, happiness, peace & cure that can be found. You are my hero. ((Hug)) Thank you for making this positive website for all of us who need help or just a little understanding. :) You are SO appreciated! :)

  58. Feather says:

    Thank you for sharing such a personal moment in your life. Your blog is a real, raw testament of the struggles people face who live with a chronic illness. Each day is a new battle, but also comes with victories! You are inspiring to so many, keep fighting.

  59. Debra says:

    Thank you for being so honest about your experiences. You are such an inspiration to so many people and I am so glad you held on to hope. This blog was one of the first places I landed when I was diagnosed with R.A. last year, and you are very appreciated and very needed. Take good care of yourself and hang in there.

  60. MorethanRa says:

    It takes guts to share your feelings when you hit rock bottom but I’m glad you did. I have been there and others are so close to the brink and they need to hear that it is ok to get there and come back up even if it is a slow climb. Life is so worth living and we are part of many that loves us. Keep climbing :)

  61. Debbie says:

    Thank you for sharing your struggle. It takes courage and I am so proud of the bravery you showed, then and now, in continuing to fight for a better life. It is sometimes overwhelming living with this disease, and the pain, fatigue, appointments, gloomy outlook can all seem like too much to handle. We all just need to take it one day at a time. Sounds so simple, but we all know the truth. It is hard. But we are all survivors, and someday, I hope to thrive again. And I hope the same thing for you too!
    God bless you and your husband……..

  62. rick humes says:

    I understand what you were going through and have been there myself. Although this is the first time I have ever really said anything to anybody about it. My wife and kids don’t know how close I came.

    I got off of all the meds and things got better, much much better. I have far more pain these days, but my mental stability is a lot better and I don’t feel like I am at the end of my rope. I no longer work and that has been a huge strain on my family, but it also has been a huge help to me. When I can control my stress levels better, the flare ups aren’t as bad.

    Besides the obvious stuff, also know that you are important to all the rest of the people living with RA. You help to get the word out there about this much misunderstood disease. Thank you for all you do.

  63. lorraine thompson says:

    Hi I read your posts must be 2 years now . thank the lord you keep going on . I RA now about 4 years now and reading your posts keep me going . you are a strong person and we got to keep going .like your self l find it hard to walk any distance but its coming into the summer here so as we have a forest park here i try to go walking there .Ifind it peaceful the trees the flowers the birds singing . god bless you and keep writing

  64. Sharon says:

    Thanks for sharing. It’s been quite a year. I’m glad to see you are transforming. You continue to inspire. Hugs, Sharon

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