Ups and down

Its amazing how you can be on top of the world one week, and the next week, R.A. can bring you so far down.

The initial relief I felt from my meds have slowly stopped working and Im in the midst of a hard core flare. The last few of my joints that haven’t been affected have finally jumped on the R.A. bandwagon. Now that my shoulders and ankles are in the mix, the only unaffected joints are my new knees. Jaw, neck, shoulders, elbows, wrist, fingers, hips, ankles, and toes.

On top of that my recent Xrays show joint damage not only from Rheumatoid Arthritis, but from Osteoarthritis as well. I dont even know how it’s possible. Im only twenty four. How is this happening???

I feel, like once again, I let my  hopes up too high.

I have amazing new knees, and I’m still very grateful, but its like my white blood cells want to make it up by attacking my other joints even harder.

Im still so frustrated at the simplest things I cant do. I actually had to miss a grave side service yesterday. Now I’ve missed alot of things in the past couple years. Birthdays, graduations, dinners. But never a funeral. And so that is a whole new low for me.

Im desperately, desperately, trying to stay positive. But I feel like Im loosing the fight right now.

My knee still isnt straight. And my hip pain has made walking almost as painful as before. My rheumatologist gave me the name of a pain management specialist. Im so frustrated I just want to give up. I dont even want to try anymore. Why did I think everything would be solved after my new knees? I never thought everything else would fall apart. But of course. Of course.

There is still a chance that the meds will start working again. It’s only been two months. Im still doing my physical therapy at the clinic and here at home. Im not going to stop of course, but it’s hard to stay motivated right now.

I went out to eat with a friend a couple night ago. The retraunt is right off the highway so it was really loud. A very large man started yelling at us across the parking lot. I looked at my friend and said ” Is that crazy man yelling at us?”

As we got closer, he kept gesturing at me, and said “What happened? Whats wrong with you?”

I swear on my life this happened. And so I tell him and he calmly said “Oh, ok.” and climbed into his car and drove away.

Is this happening to anyone else?


18 Responses

  1. Good to see you posting again. RA is physically draining, isn’t it? I am still trying to figure out why he was yelling at you. I assuming you were limping and dragging yourself, I know what that is like. I am only 33 and I am always physically and emotionally drained. It is hard for me too and sometimes even embarassing at work.

    • Yes. He was yelling at me from across the parking lot. Once he was closer, the volume went down.
      Limp= unbelievably rude questions. Lol.

  2. At the risk of saying something annoyingly positive, or that comes across the wrong way – all I am going to say is I am thinking of you.

  3. Everytime I think I’ve heard it all, or seen it all…
    I am once again shocked. Shocked by the evil of this disease and the way people act. Sorry you are going through this. Does it help a little to know many of us are going through it too?

  4. I can hardly find words. I found your blog last night and stayed up way too late reading chronologically through every one of your posts. I cried at times. I laughed at times. I wanted to punch someone on your behalf at times. And at all times, I cheered hard for you. What an incredible inspiration you are! I have had RA most of my life (JRA, several years remission, came back as RA when I was 20), and though it has been very bad at times, it’s never been as debilitating as yours has been. I started a mild flare yesterday and, because I have just started my own blog, I decided to do a search on RA blogs. Yours was the first that I visited, and I am so glad I found it. My thoughts are with you.

    • Lissa,
      Thank you so much for the kind words! Im glad you liked my blog. I dont think anyone had ever read it all before. Lol.
      I would absoultely love to read your blog and add it to my list. Can I get a link?

  5. Hello my name is jeff. my ex-girlfriend of 10 years sufferes terribly from R.A. She felt the same as you about the methotrexate. Although there is no cure present there is a way to manage the pain. The docters bombarded her with harmful powerful painkillers for years. from perkaset to oxycontin. not only do these drugs have damaging side effects, but they are highly addictive. I dont know if you are currently taking any of these opiate based meds but they are very dangerous. She actually lost an overy and has kidney/blatter problems as a result.
    After trying a variety of pills and dosis which would work for a while but constantly needing to up the dose we decided a more natural painkiller…marijuana
    Although it is illigal it works great for the pain on two levels
    1 it works as a natural pain killer blocking certain pain receptors in the brain
    2 diversion the high effects of the drug ease your mind from the deppresion related to R.A. and devert your attention from focusing on the pain.
    please consider trying this if you already havent. although you do get “high” from smoking the pot the effects are no where as powerful as opiate based pills which promote heroin like effects.
    i am very serious about this my ex is still my best friend and watching her suffer from this desease breaks my heart.
    good luck with everything and please contact me and let me know what you think or if you need tips on scoring some marijuana

    • Thank you for the tip. I dont however like the feeling of smoking pot. I’ve only done it a handful of times, but can not stand the way it makes me feel. I’d rather be in pain than not even be able to concentrate on a book I’m reading.
      Thank you anyway for the concern. It is always greatly appreciated 🙂

  6. sometimes I wonder what is going on in people’s minds. I’ve definitely had people stare before and other people give me a hard time because they think I should be able to do things. Sometimes it feels we can’t win. I’m really sorry to hear that things aren’t going well right now. I’ll keep you in my thoughts.

  7. So sorry you’re having such a rough time at the moment. I do hope things improve soon!

  8. I haven’t read all your blogs yet, but I just want to tell you that my thoughts are wiyh you. I had my left foot reconstructed in June and was off my meds for surgery. My first dose of orencia post op didn’t seem to help and it felt like my whole body was going into a flare. After my second infusion I started to feel better again, so I’m hoping you will too. Major surgery is tough to get over, and even harder for our bodies when you have RA. Take care… you are in my thoughts!

  9. I am in the midst of the worst flare I have had since I first got this disease so I can totally relate. It is hard to stay upbeat when your body is fighting you all the way. The only thing that keeps going is that I am terribly stubborn and I refuse to let this disease get the better of me. I truly hope that your situation improves soon. 🙂


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