Wonderfully Me


I seem to be quick about the negatives in this journey with lupus, but for today, I want to share some good news. For two days now, I have been on a new medicine and for two days I have felt like a totally different person. I feel alive! I have energy! I feel light!

See, I told you…good news indeed! I am finally feeling wonderfully like me!

The reason for this is I had my appointment at the pain clinic and they are addressing the oppressive pain I have been dealing with and working on a plan of action to make me feel better. The first step is the new medicine I am on. The second step is a tens unit to target my pain and the third step is massage therapy. Who knew?

For those of you who are not aware, I have been virtually bed bound for some time now. I only got out when I had to, like doc visits and grocery. Even those were hard to do because of the overwhelming pain. Some days all I did was get up for the bathroom and the rest of the time was spent in bed. Not sleeping, just laying or sitting and unable to do much but feel bad. It is not a nice way to live.

I never wanted to see a pain doctor. I had heard all the bad stories about pill pushers who serve the addicted population and that only addicts went there. It took one strong willed lupie sister to talk me into going. Ok, scratch that, she threatened to come to my house and make me go if I didn’t make an appointment myself. I am so thankful for friends like that. She cared enough to do that and make me go into uncharted territory for me. I was way out of my comfort zone here.

I never wanted to go because in my mind, those who needed those things were weak and unable to be in control of their lives and take charge of their pain. I was taught growing up that you overcome pain by sheer willpower and grit. Well, how did that work out for me? I was reduced to being in bed most days because of the pain I was in.

When I finally got my nerve up to talk to my rheumy, he gave me a pain med that did nothing for my pain. After my friend and several other lupies I had talked to told me their stories, I decided to make the appointment. I kept the appointment and wow! why did I wait?

You see, I had done research and even posted articles on this blog about pain management. I was a fraud though, because even though I acknowledged that others needed stronger pain relief for a better quality of life, I would not do it myself because of these thoughts in my head I mentioned above. It is like saying “For you it is great but I am not that much in need”. WHAT!?

When your quality of life is impaired to the point that you are almost completely bed bound, how much lower do you want to go? So, I am here to say….if you are living in pain, get help! Do not think like I did and do nothing. I mean, unless you enjoy being in pain.

Some are fortunate enough that their doctors will help them in pain management. Others may have to seek out a pain clinic for their relief. The bottom line is how bad do you hurt? Today, I can honestly answer that even though I still have pain, it is in the range that I can function and get out of bed and do things! It is still there, just not as bad as it was.

I am thankful for those who gave me their honest input and lovingly pushed me to do this. Thanks is not enough! They have helped me to be able to live better, love much and give to others. The gift of these friends is immeasurable. Thank you all and you know who you are! 

Decisions, decisions


Today was one of those days where you think about things in your life and how to change them for the better. It requires me to make decisions about a few things, but the one I will discuss here is my doctors. I adore my family practitioner very much. She is awesome and never makes you feel like you are stupid when you ask questions.

I am currently in process with my neurologist. In other words, he is still new to me but so far I have been impressed with his manner and decisions in my care. He is doing tests and making sure of the things and how to deal with them. I like that,

My rheumatologist is a nice man. He is also the doctor for my clinical trial I am on (benlysta, soon to be approved). I like him. There is one flaw in the equation though. He seems reluctant to help me in the pain department. So now I have to make a decision. I actually have had three different people tell me I need to go to a pain clinic. These people know me well and after discussing my issues with them, they agreed that maybe I need a new doctor. I really do not want to leave this rheumatologist, however, I may take the advice of these folks and go to a pain clinic for help with my pain.

You see, my rheumy is treating me for depression, but I am not sure he realizes that I am depressed because I am in so much pain right now. I mean seriously, in pain. If you add in the toxic fatigue and everything else, I am in a flare and need help here. I truly believe that if I got the pain meds to help with the pain, I may not be depressed. The pain makes me be a pain. When I am in pain, I am grouchy, grumpy, and depressed because I do not want to be in pain.

Now I need to make an appointment at the pain clinic and see what happens. I will update when I go.

Have any of you had issues like this before? I really could use some feedback from others who have experienced this as well. Thanks!

Spoke too soon


Yes, I did it again. I spoke too soon. I was in such a great mood and felt so good that I did a bunch of things today. Guess what happened next? For starters, it started raining. Rain is a good thing but with the cold front, it brings more pain and believe me, I am feeling it. Next I started feeling like I was coming down with something and found my lymph nodes are swollen again. Add my hair is falling out and you can see the wolf is punishing me for today.

I hope that tomorrow will be much improved. I am making my mind up that I will have a great day tomorrow! The mindset of thinking positive definitely helps. I have a question though….do other lupies feel like this when it rains? That would be a nice poll question. Ok, will make the poll then and see what the concensus  is among those of us with lupus.

So for now I will just post this short note. Have a great night everyone and think positive so our days are quality!