Treatment Blastoff

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

Ahh To Begin Again

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.

God Bless!

Dianne

Pick Up The Phone Already

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.

God Bless!

Dianne 

Set Backs- They Move Us Forward

Life is so simple isn't it? I'm not talking in the big realm of things but more in a physical sense. Most of the world gets up, even when they don't want to, has body aches and pains and moves on. Once they are up and around they are able to function on a somewhat normal basis. I dream of being one of those people. Is it possible? I will continue to believe that it is for me and others I know who suffer and for those I don't know.

I had the bright idea to paint the kitchen table and chairs and now wonder what the heck I was thinking. I had been doing okay getting by day to day with the normal, normal for me stuff, but then I painted the table. My neck has decided it didn't like the fact that I tackled such a big project. I did it last Thursday and have been paying dearly ever since. The strange thing about having one part of your body decide to turn on you is that is sets off a whole number of issues along with it. My neck became inflamed which has caused so much more. Why can't it ever be just one thing? Oh ya the autoimmune response. You forget that it is a whole system disease and not just a one thing at a time disease. The worst part for me is when my neck goes out it causes me to live in some kind of a weird head fog. I feel like I am in a bubble almost floating along and not really here. I think my brain becomes so overloaded with the pain it shuts down to some degree. I can hardly talk to anyone because truthfully I really don't want to. It makes it ten times harder to put on the fake "all's good" face when you are not yourself and suffering hence even more exhaustion. This is when I get more down and wonder how I can do this any longer. I know I have to but I really don't care when it is like this. It makes me want to give in and throw in the white towel. I know I can't but it is what it is. I need a few things at the store but the thought of going out is painful to even think about. Driving, walking in to get the stuff, checking out, and driving home will kill me. Hard to believe to a normal person. I know. I understand why too because when I have these setbacks it is hard for even me to understand. Then I look at my house and I know I need to clean but I know I can't, at least not today. I tell myself it's okay and I know all the dirt will wait for me until I can do it. It's okay. It's okay. This chronic illness is just as much a head game as it is a physical game.

Lesson in all of this? Who knows. I think to myself why do you do it to yourself? The table was fine it really didn't need to be painted. I know that but I also deal with the fact that since I don't work or get out much I need to feel accomplished like everyone else does. I can look at my table all done and think to myself I can still do things that the normal world can do. Yes I suffer but the point is I can still do it. No one can take that away from me except me. If I crawl in a hole and never have projects or those little accomplishment then what is the point? Hobbies and mental stimulation keep me going. If I have something to do that helps me feel better in all of this physical pain and it makes life worth moving forward. I think that is called human nature to some degree. I know this set back will pass and I know another one will be right there waiting in the wings but I will not allow them to stop me. I now have six chairs that need to be painted next to match the table but don't you worry none I will get those done too! I hope you can keep pushing on too my friend!

God Bless!

Dianne

Say What?

Yesterday I was stewing about something that happened at a doctors appointment at Christmas time, which was four months ago. I came to realize I have been angry and holding all this anger in over the treatment at that appointment. I didn't realize how much those comments really affected me until I read an article on doctors who patient profile. The ones who either look at you or your chart and make the assumption you are either lazy or can't possibly be happy when you are over weight. There are so many other points that could be hit on here but I feel this is what my experience with this doctor was. I went in for a blood pressure appointment need I say more? Probably not but I will. I was asked if I like taking pills. Yes, "Do you like taking pills?" came out of his mouth. Little did he know who he was dealing with. The what comes to my mind comes out of my mouth person that I am said, "Does anyone like taking pills?" I think I caught him off guard but oh well if you can disrespect me I can disrespect you. Game on. Then I got the exercise lecture which I know and have heard a million times so guess what came out of the pie hole? "Do I look stupid?" Shocked him again. He said he wasn't implying I was stupid but from my view that is exactaly what I felt he was implying. I always find it odd and somewhat amusing when I see a doc or a person for that matter who has no clue as to what my history is but they feel it okay to give me their opinion on something they know nothing about. Things that me me go Humm Humm Humm. It was strange because Rich was with me at this appointment because we had to finish some last minute Christmas shopping. When we left and got in the car the first thing he said was, "Do not listen to what he said he was rude and you do a good job considering what you live with." He always knows the right things to say but being a person who is a slave to illness you take all those rude and unnecessary comments from people who don't understand, personally. My world is small, very small, much smaller than the normal world. My life is getting through each day not worrying about the next thing I have to do. It is one minute at a time. It is endless planning in my head. When I have task I have to do I must have a detailed plan on how I will accomplish that task. If I have a doctors appointment that is pretty much all I can do that day because it wipes me out. When I have to deal with rude doctors who dont understand and put me in the same category as everyone else it stresses me to the max. If I could have them live in this body for a week I can bet they would be begging for their life back. Their ability to jog or swim laps in a pool for an hour ah what a dream that is for me and when they tell me I need to do the same the anger wells up inside me.  Writing this blog helps me to try to make some kind of sense out of comments like that so does the fact that I will never see that doctor again.  I must admit most of the time I can't understand and truthfully I don't want to. What I learn is that I must continue to have compassion for others no matter their situation, no matter what I think they should or shouldn't be doing. It's not up to me just as it is not up to anyone else to tell me their opinion or to profile what I live with when they have no clue. As I pondered on this for so long it reminds me of the OOM doctor I had who was amazing not only because he helped me feel better but because he understood. He got it. He would tell me not to be so hard on myself and not push myself. He understood I really wanted to be like everyone else. He never made judgements or told me I didn't do enough. He understood chronic illness and did his best to help me and his patients feel better even on the days it meant you made it out of bed today. I struggle with doctors so much not because they say things they are suppose to but because I have a hard time keeping up with all I am suppose to be to them. In someways I don't think I will ever understand it but I'll keep on trying.

God Bless!

Dianne

😕

You know how companies have a logo? McDonalds has the big yellow M and as soon as you see it your brain automatically tells you McDonalds. It's funny how are brains are wired to recognize logos. A while back I was looking at the emoticon faces on my phone and I came across this face 😕. I was actually looking for a face to send to a friend in a text. I wanted a face that explained more than just a face but her true emotion and that is when I came across this 😕. I didn't send her this face but after I finished the text I went back to this face 😕 and stared at it for some time. I thought to myself this is life with chronic illness. Some of my thoughts went like this: Every morning when you wake up from a night of pain 😕. Everyday just trying to make it through the day being normal knowing all the while you're not 😕. Every time you have to answer the question, "How are you?" 😕 man I wish people just wouldn't ask that. I'm not fine and I never will be 😕. Every time I am weak and so fatigued I can hardly do anything but rest 😕. Every time I start to believe that I am lazy or no good because I can't do what real people do 😕. Every time I have to put friends off when they want to go out 😕. Every time I am expected to be the strong one when inside I'm the weakest 😕 or as I call it living the lie. The lies of living with chronic illness not because people don't understand but because they just don't have the time to 😕. I have come to believe that people really do think you are the same person you were before you became ill but believe me you're not 😕 no matter how good an actor you are 😕. My list could go on as I am sure yours could too in whatever you deal with on a daily basis.

I sure don't want to sound like downer Dianne just real Dianne because it is what it is. After years of this it begins to wear you down. I fight it, I do, and my life really is 😊 but the personal reality of knowing this is forever is more of the 😕 than the 😊. I know in the end all the pain and grueling fatigue will be gone 😊 but right now it isn't and that's just the way it is 😕. Every day I 😕 But I must 😊 because there must be some reason for it all, right? Hope! I know I use that word a lot in my blogs but it's all I have. It's all anyone dealing with chronic illness has. The belief that life is 😊 even in the midst of the 😕. It is an inside job. You can have it all and still struggle but you have to keep the hope of a brighter day.

So 😕 take that 😊😄😃😀 because you will never win as long as I have air in my lungs 😛.

God Bless and keep on Fighting! 😊

Dianne

Still Pushing On

I haven't been on here in a while in the hopes that if I ignore all my health issues they will magically disappear and my life will return to the way it use to be way back when I was healthy. Truthfully I would take even half way healthy at this point but the mind over matter thing isn't curing me that's for sure. I just read something that said:
I'm always scared to say how I really feel. No one wants to hear "It's getting worse." Everyone wants to hear "It's finally better." But, what if it isn't? What if I'm lying?
This hit me hard as I try to act like my life is just fine and all is well, not because it is, but because I know no one gets it. I'm sick not stupid. I know what people think and it just makes it so much easier to not tell anyone how it really is because all they want to do is fix you or quite honestly not hear about it. I get it I really do, its okay, as I continually live in my own hell, alone. It's funny how people think things are fine when they are removed from a situation. I know most people look at me and think there is no way she is sick. I wish that were the truth especially last night when I was up half the night in excruciating pain in my knees and elbows. Pain so bad that sleep was very disrupted. When this happens I try to go back to sleep and toss and turn in hopes of relief which many times never comes. The pain no one sees so when you can't see someone's suffering it isn't there. For me it is quite a different view. Nights like that make the daytime almost unbearable.

Yesterday had to go to the grocery store I didn't want to but I forced myself to go. It was fine I made it through got back home and carried the groceries into the house. I put them all on the island and knew I needed to rest before I could put them away so I sat at the table and jotted down a few personal thoughts on how hard it is to grocery shop. Something so simple to the real world. I'm pretty sure a healthy person reading this thinks it sounds crazy but like with everything until it happens to you there is no way you can understand it. I tried to use the mind over matter thing and tell myself to just get up and put them away but I physically couldn't do it. Weak and exhausted I sat there and thought to myself this too shall pass. It did. I put the stuff away and carried on, onto the couch for a while but at least I carried on. I spent some time on Pinterest looking at ideas for decorating. Looking at the things that give me hope in this hell. I thought of all our kids and their families as I do so many times throughout the day and the joy in my heart out weighed the heartache of the illness that controls my life, the illness no one sees or understands.

Here are a few of the things I jotted down yesterday. It sounds so very ridiculous but writing stupid stuff like this down helps me process what I am going through since I am my own therapist in all of this. You know you are chronically ill when:

-Your favorite part of the day is bedtime.
-When taking a bath makes you moan like a French whore.
-You are unable to sleep because the pain controls everything.
-You wake up in the morning more tired then you were when you went to bed.
-You dream of a world that understood.
-You have to cancel plans or not make plans because you need your energy to just exist.
-You feel alone, more alone than anyone could ever understand.
-Your best friends are your dogs because you spend your days with them instead of people.
-You can't hold down a job because you never know what each day will bring. (Thankfully I am able to be home and have a very understanding husband.)
-Your favorite place to come to is your blog because in some strange way it understands.
I could go on and on but I won't.

I feel like I am at a place with my blog where I don't know what to write about anymore. I have covered every topic that affects me personally, so why write more? Is it a time to end this and just let it be what it is? I'm not sure. My writing skills have faded along with my illness. the years fly by and each year you wonder if this is the year you will feel better...or die. I am off all medications for my arthritis and I wonder if that is my whole problem. The thought of going back on any of them is a heart wrenching thought. I must say I was doing better on them but at what cost? Side effects that were unbearable. There is such a give and take with being chronically ill. The decisions you must make in order to live somewhat of a normal life are hard to make. I wish I had that crystal ball to look into and the answer would pop up all sparkly and shiny like a brand new penny. Here you go Dianne here is your answer, do this or do that and waa laa everything will be better. We all know life doesn't work like that, it never has and it never will. So we push on. We have faith. We have hope even when the hope is just a little glimmer of light. I always think to myself as long as that glimmer of light is shining through we will make it and on the days that the light is brighter than most we push ourselves to do more, to be better, and to fight to the end. Like I always say what more can we do?

God Bless!

Dianne