I have been lurking but not posting because everytime I try I just start crying. This disease has been so hard for me. Right now I am just angry and sad. It is such an effort just to get out of bed. The stiffness is so bad in the morning that walking to the bathroom is a coreographed event. I push myself to move through the pain so that I can walk before my family gets up. I am in so many ways ashamed that I am not the wife and mother I was just a few short months ago. I find this so agonizing!!! I make it to work and after a couple hours and some ibu I can usually get some relief. But wham around 3p.m. the fatigue and the stiffness come back and I still have to make until 5 p.m. I get home and then I push myself all the while just looking to the clock until I can justifiably go to bed where even with medication I am still not sleeping great and then it starts all over again.
I have a younger sister who has breast cancer and after surviving 16 weeks of chemo she will finally have her masectomy on Tuesday. She is doing so great and has a great chance of a full recovery and I have to admit I am somewhat jealous and I feel so guilty for that!!! and the sad part is she told me a while back that she she would never want to trade places with me.
What I don't even know how to express is that I have always been the strong one. I am scared to even talk to my husband because after a 20 year military career I feel he would just view me as weak. I am so scared that he will just get tired of me. I am no longer the woman he married 22 years ago and this hurts so much. I miss me so much and cannot understand how just 6 months ago I was fine and now wham I have not had a pain free day since. I am so sorry I am complaining but I just need to get it off my chest because no one around me can even begin to understand what I feel right now. I watched this disease cripple and deform my grandmother for over 30 years and it frightens me.
Connie
Hi Connie,
I'm sorry you're feeling this way. Let me tell you though, I was right where you are now about 15 years ago. The thought of getting out of my bed made me cry. Going to work was so hard. I eventually had to quit my job. I could go on and on about the changes I had to make, but I know you understand.
But it does get better!! How much of the mtx are you taking? Can that be increased? Make sure you're telling your doctor how you're feeling. Not just physically, but emotionally as well. Are you taking anything for pain? If not, ask your doctor for something.
I am taking only 10 mg of MTX and I have spoken to my RD on the phone, who I see on the 12th. He has assured me that he is increasing it as it is not working as effectively as it did in the beginning. He said he is adding Fosamax too because I have been on prednisone for 3 months. I have no pain meds except ibuprophin. I have thought about discussing it with him because the pain makes me even more emotional and frustrated. I just don't want to feel like a wimp by asking... sounds stupid I know. I don't think I will be able to hide my emotions from him as I seem to be having a hard time holding it in lately. Thanks for replying....
Yeah, maybe increasing the mtx will help, Connie.
You know...it took my about hmm..I think 11 or 12 years to ask for something to help with the pain. Most have done nothing for me or just make me sick. So even now I'm hesitating for asking for something stronger (using fentanyl pain patch now) but my next app't I will ask. So I know what you mean. But when we're in pain despite what meds we're taking, then we do need and have the right to have something to help with the pain.
Good luck with your app't on the 12th!
Kelly (believe me...it WILL get better
Alan
Hugs, hugs, and more hugs! I was there in the beginning. I didn't cry until after I started AP, and then I cried for 7 1/2 weeks straight! Strange, isn't it?
Find what works for you! Hang on!
Hugs,
Pip
Connie,What I did last weekend to help me move through the despair and despondency towards hope....
(most of these ideas came from others on the board through posts or private messages, and I thank you ALL)
in no particular order:
1. rented funny movies. I was so spent from crying, I needed a huge change of emotion. I love Reno 911 and rented 2 seasons worth. I also watched funny stuff online with my son, had my son read jokes to me, etc.
2. confided in someone. I chose this message board because I knew I would get what I needed from the women and men here. They could relate and understand, which is what I needed. I also needed to know things would get better and they all assured me it would. I trusted them because they have been there and made it through the darkness. I love my husband dearly and he would do anything for me, however he has never been sick a day in his life. Many men, by their nature like to "fix" things. If I go to my husband with a problem, he tries to find or offer a solution, rather than listen, which is what I need. I learned to go to my girlfriends and this board to get "heard". Not to disrespect my husband (who may be reading on here from time to time, but women friends are different....that's why God gave us girlfriends).
3. feed myself well. I found a list of the 10 best foods and went to the market to buy them (bought 8 of the 10, cuz 2 were icky). I have been working very hard to fuel my body well, to help my overall health.
4. schedule self-care stuff - when my finances improve, I plan to incorporate massages into my self-care routine. I deserve it. When momma aint happy, aint nobody happy. Massages make momma happy.
5. Bath and Body works - go there. get some bubble bath, shower gel, whatever in several fragrances that make you feel happy and good. Aromatherapy can be as simple and surrounding yourself with smells that make you feel good. Grab some scented candles while you're there
6. contact your doctors. Is your appt still 3 weeks away? call and ask if they can move you up, let them know you're in crisis or pain. Ask if there are cancellations will they call you. Be honest with your doctor. He's heard it all before. Don't minimize your symptoms.
7. Research online. Research pain management options, alternative/complementary therapies, stress management techniques, etc. Be well informed, you'll feel empowered.
Gotta get lunch ready for my son and his friend. Let us know how you are. love, J
Connie, I am so sorry for your suffering. I have been where you are now very recently as well. It is a hard and desperate place to be. I was always the strong one too, but now I am learning there is different strengths, physical and emotion/spiritual. When we are dx and going through the grieving process we all discover a different strength that has always been there, but we never felt we needed it.
Give yourself time to grieve, and here is the place to do it. Our husbands or significant others are grieving too, so they cannot support us the way we need it, b/c they have to work through their issues too. There are great people to confide in and most of us have the few that we just spout to when we need it. Open forum is fine, but PM is much more personal and you can use all the anger and sarcasm there.
Take care of yourself, and don't ever feel the need for apology when you need to vent. You are new to this much like me and Juliah and others...you NEED to vent.
Take care, shel
Thank you so much everyone. I really just needed to reach out. I feel like I am losing my mind lately (another side effect). I just needed to know I wasn't alone. The pain, fatigue and overall newness and shock of having this disease are beginning to wear on me. Julia I will take your list to heart and last week I read what you wrote and I could not even respond because I was sobbing so hard because you were describing me. I know I will be up and down but lately I just felt alone, just me and RA. My doc is wonderful and I need to be honest with him. He told me three weeks ago on the phone that my MTX needed to be increased that if I was in pain it was not working. He even told me to call him if I didn't improve. It is amazing how stubborn I am because instead I went to an ortho and got a cort shot in my foot. I really appreciate you all just listening to me. It truly felt good just to get it all out
Connie
Hey Connie, I was DX'ed in June of this year too. I feel that same way you do, and I so hope that all the drugs make things easier for me. According to my RD, he's going to change my drugs around again on the 18th, probably to Enbrel. I hate changing drugs because of the delay time. I get to feel somewhat okay and then bam everything goes to pot again for a while.
I wish there was one universal way to help stop all this pain and damage so that these RD's wouldn't have to spend so much time experimenting with different drugs and doses. Oh well, I guess I shouldn't complain too much, everybody has their own issues.
Juliah, you sound so much better this week - emotionally, I mean. This board has many caring people to help eachother through our toughest times. At my lowest point, I remember telling my dr that I wished I had cancer instead of all this because I would either get better or die. I didn't realize I was depressed, but he put my on an AD to see if it would help and it has. It was a difficult thing for me to do because to me it meant I was admitting to being weak. Not true! I am a fighter - we all are.Connie, it is really good that you wrote to us about how you are feeling. That is the first step to helping yourself. As a mental health therapist, I'm so accustomed to helping others, I neglected taking care of myself. I felt like I was supposed to hold it all together all the time. I have learned that NO ONE holds it together all the time. Those who appear to be doing well and have it together now, have no doubt gone through the same fear, worry, depression and despondency that we have experienced (or are currently experiencing). I was always amazed reading of people's courageous battles with cancer or other serious illnesses, thinking that when a loved one describes someone's battle as "courageous" that it meant they didn't have any moments of sadness, depression, fear, anger, etc. I now know that being courage isn't that at all. Courage is having all of the above-described feelings (and more), but letting yourself feel them, picking up the pieces and moving forward. Setbacks are a part of the disease. It's unrealistic to think that every day from here on out will be "glorious happy dancing through the meadows" kind of days. Some days will be harder than others (physically AND emotionally). However, you'll realize that God gave us tools to get through the difficult times. Allow yourself to reach out. You are not being selfish. I felt selfish and self-centered last weekend when I poured my misery out on here. But now I realize that I was speaking what others might have been too depressed to write about. Try to do something today to take care of yourself. If you're a believer, pray, read something uplifting. Take a bubble bath or steaming hot shower. Read something just for fun. Surf the web for fun, not knowledge today. Go out to dinner somewhere divine. Buy yourself something comforting (plant, cozy pajamas, a magazine, whatever makes you happy). Let us know how you are doing. We care. love and hugs, Juliah