Let me break this down. I am not living with RA. Some days I do not know if I am even surviving with RA. Last week, I had a little to medium size meltdown over questioning if I will ever regain range of motion in my left hip and be able to cut my toenails again. What if my very accommodating husband isn’t around and I need them clipped? Then last night as I struggled to limp to the bathroom for the 3rd time that night (the amount of water I need to drink to flush the meds out is ridiculous) I felt him offer me his arm as he clumsily appeared next to me, more than half asleep, and helped me into the bathroom.
And I was worried about clipping my toenails!!
As I struggled to get comfortable in my bed, it hit me. And it hit me hard! There is a very real chance that I may become unable to care for myself. I look to my almost 92 year old grandmother in awe and wonder if I will ever be able to be like her. She lives alone and can take care of a lot of daily things by herself, and this is after puncturing her lung and breaking her back requiring steel rods.
I get up every morning and limp around my house while getting ready for work and getting the kids ready for school. I go to work, and for those who know what my job is like, you know how my days go. I come home and by 6:30/7:00, my body has pretty much quit for the day. Friday nights I take methotrexate. Saturdays are spent dealing with some light nausea, headaches and some serious fatigue. Sundays are usually good! By Wednesday nights, I feel as if the methotrexate has left my body. I have finally tapered off of prednisone after A LONG, LONG TIME of crazy mood swings, night sweats, and too many pounds gained. I guess the next step is to up the methotrexate or switch to injections.
For months I have been mourning the person I used to be, and mourning the future I once dreamt of. My best friend is a very spiritual, positive person. She has told me so many times that I get from the universe what I send out into it. It’s just so difficult to think positively and not be sad or feel cheated. I cannot tell you how many times I have uttered the words, “I’m going to make some positive changes, I’m going to take better care of myself, I’m not going to worry so much.” So far, I have not been very successful at achieving those things. But, I want the future I planned on. I want to be able to enjoy my life and be present for my children and husband. I want to dance at my children’s weddings and walk the beach with my husband when we retire. I do not want to cry every night thinking of what should have been.
So, any positive words of encouragement or wisdom you can send my way would be greatly appreciated. And if you catch me being bitter or sad, tell me to knock it off!
Overhauling Mama 
I am telling you what I tell mine, you come from an extraordinary long line of very tough woman, you will be just fine, one foot in front of the other and breath, your grandmother is a little ignorant, not aware of how bad she was, guess what, adopt that attitude, we are all here for you baby girl you just let me know what you need I am there.
You need to focus on today and one day at a time.
When you are fatigued you must rest. Start with one little change, master it and move to the next. Speak with your doctor as there are other medications. Sounds like Methotrexate has failed.
If you need Prednisone to get you through until a new medication starts working then so be it. The whole picture may be to overwhelming so forget it.
One hour, one day and what needs to be done is what you should focus on. You are strong and if you focus it will be much easier. Yes it sucks and nobody should have to live this way. I know you can do this. ❤️ Please let me know if I can help.
I understand all the feelings that you mentioned in your blog, Colleen. I’ve been dealing with all these emotions over the last 16 years with my autoimmune stuff. I can only echo what Kathy and Paula have said to take it one day at a time. That’s the best thing you can do for yourself. The other thing that has helped me is to realize that modern medicine isn’t the be all and end all out there. Look into alternative or integrative medicine. It has helped me and a lot of people who suffer from autoimmune related illnesses. NEVER GIVE UP; NEVER GIVE IN!!!