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!
Wednesday, May 13, 2015
I'm sitting here both terrified and, in an odd sort of way, excited as I am preparing myself for a stressful doctors appointment tomorrow. I haven't had this feeling in a long time actually almost two years because that is when I weaned off all my meds and decided to go it alone with this chronic illness misery. Don't get me wrong I truly believed stopping the meds would change my life for the better but I am realizing how dead wrong I was. I have to admit it I am in misery. My primary doctor has been trying to get me to go back for over a year now so her message the other day about some blood work I had done helped me to make this decision too. The vicious cycle of pain and fatigue are ruling may life. My quality of life is in the shitter. When I look back now on the time I was on the meds I have to admit I felt better. Was I doing great? Did I have a "normal" life? That would be answered with a big fat NO! But I sure do hope to find some sort of new treatment plan tomorrow.
I have been going over this appointment in my head for the last half hour obsessing about if it will be a waste of time or if the new doc I am seeing is going to be rude. All the crap that runs through your head when you are chronically ill and have to go to the doc or any doc for that matter. When it's over it's never as bad as all the voices convince me it will be but still very, very stressful. I know my quality of life is bad and I admit I need help but along with the help comes all the doctors appointments to assess how you are doing. All the blood tests to make sure your liver isn't shutting down. All the expense of the meds and constantly being aware of refills because once you are on these drugs you cannot to run low on them or you will pay.
All my anxiety brought me here to write once again. It really does calm me down. The only place I can let it all out and not feel like I am being a burden. Rich is working a lot right now and I mean a lot so I hold so much in so I don't worry him. Plus I'm not a complainer so I internalize all my anxiety when it comes to these appointments but I am pretty sure I will burst and cry to Rich tonight. In fact there is no doubt about it. If I don't release this tension I know it will harm me. Stress exasperates symptoms so I have to deal with this by whatever means possible which means a good cry and a pep talk from my biggest fan. He always makes me feel better. So with that I sign off but I'm sure I'll be back so to vent about something else.
Friday, May 8, 2015
It's time. It has been a year and a half or more since the last time I saw my Rheumatologist and weaned off all my meds. When I first stopped taking them I was doing ok and thought to myself I can handle this no meds things. Yes, my pain and fatigue were worse but nothing I couldn't handle. I can do this! I can do this was running through my head a lot at that point. I made up my mind that this was not only going to be a "I'm off my meds time," but a "mind over matter" time too. I thought that if I didn't think about being sick and about being in pain it would disappear and that would be it. Like I said many times before being sick isn't just a body/symptom thing it is a total mind thing. My mind was in overload mode fighting the changes that were taking place after stopping the meds. Telling myself I'm not sick I'm fine was exhausting. All the time I spent in my head telling myself that when I was on the meds and it was ok now turned into a lie almost. I thought I was okay with taking meds and being sick but then when the meds were making me more sick I fought with the idea of weaning off them. When I made that decision it wasn't like I woke up one day and decided today was the day, it took weeks actually months to decide to stop. That's the bad thing about being on drugs, in our heads we think we don't need them but our bodies tell a different story. I am at the point where the struggle of pain verses drugs is a constant conversation in my head. My doctor told me that it takes time for all the drugs to leave your body so I'm pretty sure that is why I continued to get worse over time after stopping them. My nights are filled with such pain I wonder some nights why I even go to bed. I wake up every morning exhausted because my quality of sleep is horrible to say the least. Being awaken by pain no matter which position I lay in is very discouraging. The discouragement has brought me full circle back the drug conversation that went on in my head when I stopped the drugs but this time the conversation is about getting back on the drugs. Now I know there are the haters out there who wonder why someone would take such harsh drugs but the haters have never lived the hell that I have lived in. The haters who say you should exercise and eat right and you will be cured have no idea. I have no doubt that works for many but not for all. It's like so many things in life what one person chooses to do may not work for another so we all do what is best for us. When I woke up Monday morning I finally did it. I picked up the phone and called my Rheumatologist to make an appointment. It was such a bitter sweet feeling. Bitter when I picked up the phone feeling like I have given up, stopped fighting. Sweet knowing there will be some sort of relief in the future. I hate the idea of the drugs but I want my life back. My quality of life has deminished so much since I went off the drugs. Was it great on the drugs? No. But livable. I always had a hard time doing any physical work but it has just gotten worse without the drugs. I slept so much better on the drugs too. I am looking forward to that. So this is it! Next week I will see what the Rheumatologist has to say and go from there and to think after all this time all I had to do was pick up the phone.