Venting….. I just took my first dose of methotrexate two days ago. The side effects for me have not been good. I tried to brush off the side effects and go about my daily business and learned very quickly that I’m not going to be able to continue as I usually would after this med. at this point I’m just frustrated. I have two young children, I work, and my husband is extremely supportive, but his job is demanding and he can’t always be home with me to help. I hat RA!! I hate that it has crept in and started changing my life in ways that keep me from playing with my toddler and from feeling well enough to take my kids to the park. I’m sorry for venting here but I just can’t vent to my family anymore. I know many of you are also struggling because of this awful disease. I’m still so young and there’s still so much I want to do in life..and this disease is slowing me down! It’s been less than a month since I was diagnosed and maybe one day I can come to terms with it, but for now I just feel angry about it.
I think we ALL hate RA! As a matter of fact I titled a contribution that I posted in the “Stories” section here “I hate RA.” (Check it out, I think that it may be an encouragement to you.) It is natural to feel angry and frustrated about it. After all RA is a life changer and not in a positive way. It can rob us of a lot of the good things of life if we let it. It is OK to vent here, what better place to vent than among friends who DO understand the struggle that you are going through? I am 2 years+ post diagnosis and have pretty much “come to terms with it” as you put it but it IS an on-going battle. I struggled with the MTX (and still do to a degree) but it is a vital part of our treatment plan. Some people cannot tolerate it. In my case the side effects worsened as time went on. (That is not always the case, some people see a lessening of side-effects with time.) My Rheumatologist kept decreasing the dosage until we got it to a level that I can tolerate. I still have weeks when I am hit pretty hard for 24 hours after the injection but some weeks it is not so bad. I just started my 3rd biologic. 1st one was Humira. I did it as self-injection. It worked for only about 2 months. Second one was Cimzia. I got the injections at our infusion center. It worked really well for about a year. I had about 3 months of almost total remission and then it just abruptly stopped working. (Bummer!) I am now on Orencia infusions. I got my second “loading” round this past week and will get another next week and then will start on the regular monthly schedule. I think that things are calming down some but hope to see some more dramatic results as time progresses. I said all that to say this; this ride we are on is like a rollercoaster and sometimes it seems that the car we are in has square wheels. At other times things are going to be a lot smoother. I am hoping and praying that you can find some answers and that you and your Drs. can come up with a treatment plan that works for you. In the meantime keep your chin up, enjoy the good times and try and keep a positive attitude and stay in the fight. Dave
I’m here to agree RA is the meanest disease (other than cancer). Dave, I will have to read your story, and I’m so glad you have found a way to come to terms with it. I have not, and I’m going on 20 years. I’m ashamed to say I took good health for granted. I see that now. There was a time I was so active, my husband and I did a lot of things, white water rafting, swimming, being the ones to volunteer at school with our children, I worked full time, as he did. We also have always been active church goers and volunteers. I guess I’ve gone through times of acceptance and tried to manage better. But my heart goes out to Saved by Grace. One reason is that you have had to deal with this disease as a young mother. I’m so glad you have a supportive husband, because that always makes a difference. My husband of 44 years has really been strong through all I’ve been through. I don’t know how it would’ve been if he had not. It’s funny how RA just crept into my life, after I had worked 16 years at a dental office, then went back to school for my teaching degree when my children were older. I had always thought I’d teach school, but when I finally did make it, in my 4th year of teaching I found out I had RA. I didn’t know much about it, so I researched and learned as much as possible. I was able to teach 10 years, but the last 3 years were so difficult.
I first started on MTX and Remicaid infusions. It helped at first, but after a bit of time my liver enzymes went too high, so I had to come off the MTX. I knew something was wrong because I started having a hard time giving myself injections, when at first I didn’t. Then I started having bladder infections and sinus infections, chronically. But I pushed on with my job and with life until I found out I had bladder retention. The urologist said he wanted me to catheterize myself every day, or I could be on medicine. I chose the medicine and it helped. Sinus surgery helped my sinus problem to a point. But I still kept getting sick. I didn’t want to miss work because I had a class of students waiting on me to come everyday, and I didn’t want to let them down. So I kept on. Then my back began hurting chronically. I found out I had degenerative disc disease, but couldn’t find time while teaching to have surgery, so I tried to manage. My husband saw it was too much for me and made financial arrangements for me to stop teaching. We didn’t know our state offered disability for teachers, and I was able to continue being paid through the state until I received federal disability. In less than 2 years I will start receiving regular social security. I’ve hated the stigma that comes with disability, although I cannot work.
After I left teaching, the back surgeries began, and there were several. I have fusion in my lower back and in my neck. It helped the pain at first until more damage would happen. Now I have a neuro stimulater that has helped a lot. I’ve had other necessary surgeries to correct damage from RA, and something has happened to me emotionally. I find myself getting more and more bitter. Now I have COPD (nonsmokers), high blood pressure, and high cholesterol. I give myself Orencia injections, but have been off awhile so my pneumonia could clear up. I still take Arava, and Plaquinil. I know I have to get a handle on everything, but so much is happening, I feel I’m drowning. I live with bitterness and fear of more health problems, more surgeries, more sickness. And I have a fear of becoming crippled. The list goes on and on.
I want to be happier, to feel better. I love my husband, 2 children and 4 grandchildren (and my mom who is in a nursing home). I can pretend pretty well, but I don’t want to go through life pretending and not telling my family how sick I am, and I’m smart enough to know if I don’t come to grips with this, the bitterness will only grow and I will lose myself. (For those wondering, I do see a counselor and psychiatrist, but I don’t open up fully to them.) I’m ashamed of my hidden bitterness, my being tired all the time, the pain, the fear. I’m so tired. Just to emphasize this, suicide is NOT an option I’ve ever considered, but sometimes I feel like I could just lie down and give up. Just tired. I’ve tried many different things to help, PT, swimming, but I always end up with a joint injury.
Someone can maybe help me get my mind back on track, help me do something differently, because I love life and I want so much to embrace it. There must be a way, some way that won’t backfire on me.
Wow Wannabe-Healthy, I am so very sorry that you are going through all those things! When I said that I had “come to terms” I didn’t mean to sound like I had all the answers! Lord knows I don’t and at times I get frustrated and wish that I could go back to “Pre-RA!” I know that is not possible. I was a very active cyclist before RA came into the picture and wrecked my feet and really put a damper on any kind of intense physical activity. I was looking at some of old riding log-books the other day from my mid 40s and was taken back to those wonderful memories of rides that I went on and the joy of cycling (I know it sounds crazy but those were the peak years of my cycling life.) If I had let myself, I would have been saddened by looking back at “what once was.” I know that it would be counter-productive for me to do that. I refuse to let regret for what I have lost steal the joy of the memories that I have in those days and the joy that I experience daily by enjoying what I can have, even inside the limits that RA has placed on me. You mentioned your church activities, I know that my faith and the support of my church is invaluable in my struggles. I hope and pray that you can find some answers. Gosh, I am a rookie when it comes to this, 20 years is a long time to stay in the fight against anything, much less an opponent like RA! Please don’t give up or give in, we all need each other’s support and encouragement!!! Thanks for your reply, Dave P.S You will have to go back pretty far in the archives to find the story in question!
Dave, I accidentally deleted your friend request (I think). Do you mind if I send one to you? Your response to what I said was helpful. SavedbyGrace, you are so precious and I keep in mind the struggles you must face. Please know that all of us go through good and bad times with this disease. I’m going to start journaling so I can get some of this bitterness under control. A friend of mine is going to yoga, so I think I’ll try that too, once my COPD is under control.
I talked to my husband about how I was feeling. He plans to go with me to my counseling appointment to let my counselor know how I truly feel. He’s the best.
After thinking logically about it, reading everyone’s response, and praying, I know life here will always have a hard part. But I will plan to do all I can to get through these difficult times. Everyone who writes or responds is going through this, and my heart goes out to you all.
Dave, I used to be a runner, not competitively, but for my own health. I ran 4 miles a day, and loved it, probably much like you enjoyed cycling. I’ve been blessed to have been able to have enjoyed that, plus all the other things I did. Even though teaching seems like the biggest loss, I at least had some years with 4th or 5th graders that I could make a difference in their lives. It helped that I had been a teacher when my grandchildren came along because I knew how to help them with so many things. It’s all in the way you allow your mind to think about it. I had gotten to such a low point, but I’m glad I opened up. Maybe it will do some good.
I’ve been thinking about writing a book all about my growing up years, school, family, and the many adventures I’ve had, along with scanned pics and all. This will be for my grandchildren, so when they are grown, they will have a history of what life was like in my time. They will also know what blessings they have given me. Maybe if I have a project to work on, it will keep my mind occupied, when my body doesn’t want to do anything.
Wishing all of you ways to come to terms with this life. Please let’s keep in touch when we can and help each one along the way. Days can be so worrisome, I need a place to come and be understood. That’s what this place is.
Donna, Please do send the friend request. I am glad that you are feeling better and are taking steps to better cope with things. I am glad that we have this forum for support. It helps me to connect with other people who DO understand what we are dealing with. I have a very supportive wife who is there when I need her and I appreciate her being there for me but I know that she doesn’t really understand. No one who doesn’t have RA can possibly understand. It is good to find it here. I will keep youin my prayers. Keep us in the loop as to how you are doing. Stay in the fight. Dave
Thank you both for your kind words and encouragement! It means a lot just to know that I have support outside of my family. I am feeling better today, my weekend recovering from the mtx was rough. I have always been sensitive to medications and am going to talk to my rheumatologist about my options when I go back next week. There are some days that I am able to be positive about it and others not so much. When I tell people I have RA they look at me like I’m crazy. Most of them tell me I’m too young for that. There’s many young people with RA but that’s not a well known fact and people have trouble understanding it can affect anyone at any age. Prayers for you both and I’m looking forward to finding what works for my RA and getting it under control. Keep in touch!
Glad that we can be an encouragement to you, Savedbygrace! I think that one of the more frustrating things about having RA is the fact that most people outside the RA community do not (and probably never will) understand what we are dealing with. I have ceased to let it bother me. It would be nice if they did but it is probably not going to happen. I am grateful for the support that we can provide each other here. Thanks for the prayers and we will definitely keep in touch. One word of caution: don’t be too quick to back away from or give up on any meds or other aspects of your treatment plan. Sometimes side effects lessen with time and most meds do not start working immediately. RA is a lifetime marathon, not a 50 yard dash. Patience is in order. Stay in the fight. Dave