I was watching tv the other day and the trailer for the new and upcoming Disney cartoon movie flashed across the screen. It's called Inside Out and it is basically about all the voices inside our heads that argue with each other and try to run our lives. I'm pretty sure this is one I will be dragging someone to because I can relate so well.
The past few weeks after making the appointment with my new Rheumatologist I had so many of those voices going through my head I could have had a party and not invited a soul because my party was so packed there was no room for anyone else. The voices telling me so many negative things that I became very anxious and stressed as the appointment approached. I went yesterday wondering what was going to happen since it had been a few years after weaning off the drugs. The new doc walked in and introduced himself along with a student then as he sat down said it had been a while since I had been in. I told him the reason which was because I wanted to try it without the drugs and he asked me, "And how's that going for you? You have to understand before I even answered I had to laugh inside because he had that smile on his face because I knew he already had the answer. I answered anyways, "Not good." He kind of let out a little smirk and made a joke about my list, or Dr. Key called it my love note, I brought in of all that is going on and all the newer symptoms since the last time I was in. New blood work findings, new arthritis, worsening fatigue, the fact that I am basically just getting through each day with no quality of life. The list was much longer than that but you get the idea. He said he thought I was an engineer because of how I had everything listed so perfectly. I told him I am very organized and we all laughed. Hey if I don't write it down I don't remember. He checked me over and finally after always being told I had Inflammatory Arthritis which my Rheumatologist thought was Rheumatoid Arthritis I have a definite diagnosis of Primary Sjogrens with Inflammatory Arthritis. What a relief! I have been seeing my Rheumatologist since September of 2006 and finally In May of 2015 I have a positive diagnosis. It feels like a weight lifted off my shoulders. I always knew as did ALL the other docs I have seen that something was wrong but they always told me it is very hard to pinpoint autoimmune diseases in so many people. There are many autoimmune diseases that haven't even been discovered yet and the ones they do know about there are over 100. Can you imagine being a doctor and trying to figure out what one person suffers from? It has to be like finding a needle in a haystack. I must say my doc's have always stuck by my side discouraging me from stopping the treatment a few years ago but it was something I had to do for myself. I wonder if I had stayed on the treatment if I would have received a diagnosis or if I would still be wondering what exactly what it is.
The best part is there is treatment that usually works well for Sjogrens and it is mostly the same drugs I was on before, hence the reason I felt better on them. So drug blastoff was last night when I started with my first injection of methotrexate. It will take some time to get relief as the medication takes time to work but having hope that this pain and all else that goes along with it will get better. The hope I can get back to some sort of normalcy and be more active is a bright light shining at the end of the tunnel, a tunnel I know will never end but the light is there. It's hard knowing you will never be cured unless research finds a cure but it's ok because it is what it is. You learn to deal with what you have. One day at a time pacing myself as needed and learning to be okay with it. Looking back on the past nine years of no true diagnosis just the inflammatory arthritis diagnosis I can finally say it has a name! I couldn't be more relieved and happy to have that now. It's hard when people ask you what you have and you tell them and say the doc's aren't real sure what type of inflammatory arthritis it is. You get the deer in the headlights look and maybe it's just me but the nay sayers who say we all have arthritis. I always want to say do you have this and this and this and this and this and this too? I bet NO you don't because there is a huge difference between aging arthritis that we all get compared to autoimmune arthritis that affects so much more that your joints. It is amazing now to educate myself of Sjogrens and find that all the things I suffer from are because of this disease. Amazing or unfair? I don't know. Either way it still sucks. End of story.
When I left the doctors office yesterday the voices in my head began dancing around. This time instead of telling me all the negative shit I have heard for past nine years about taking medication and telling me things that I knew weren't true they were singing in harmony. FINALLY! It's been a long haul but the day is here and it's a beautiful one. Diagnosis helps us to cope better with what we have. It calms the voices and gives us hope and confirmation that the meds are needed. I don't even think the car door was shut and I was dialing Rich's number to tell him. He was as happy as I was to hear the news after all he has lived this just as much as I have. He knows. He's been a rock through this hell and he has this disease just as much as I do. Needless to say I didn't fall asleep very fast last night as I felt like I was on cloud nine, ironic since it took nine years to get a definite diagnosis. I woke up this morning realizing it is a diagnosis but also realizing that I still feel sick. It isn't like diagnosis magically took away the pain and suffering but now I will push on knowing when a mysterious symptom appears it's Sjogrens fault not mine and for that that is peace. Take that voices!
God Bless!
Dianne
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