Wednesday, December 30, 2015

Another Year In The Books

Ah the book of life, whatever that means. I just had another birthday which makes that fifty three to be exact. I was sitting here trying to remember all of my fifty three years and trying to remember the most significant years I've been taking air in my lungs. Of course my memory can recall all the significant first. First love, first kiss, first broken heart, first job, so many other firsts the list is too long to write about. But there are the firsts and only's that are nearest and dearest to my heart, getting married, having children, grandchildren. Funny how when we think of all our significants 95% of them have to do with people and relationships. I know for me that's all that really truly matters anyways. I honestly could live in a tent as long as I had my people and the love they bring into my life. A perfect life? No, far from it but a good life none the less. I always have believed life is what you make it.

The past few weeks I have had time to reflect on the past ten years living with this monster called chronic illness. It seems like a curse but at the same time a blessing. I added another illness to the list two weeks ago and dealing with the diagnosis was devastating, at least when I first found out, but now that I began treatment I am dealing much better. It's funny when you are sick how you don't care about much at all. Your head is trying to make sense of all of it and you wonder how much more you can handle but then wala as you get treated and begin to feel better the light begins to shine again. It's a little sad that your light never really shines as bright as you think it should but it shines none the less. The blessings of illness. Your ability to see things in a different light. You don't have time for drama and bs anymore because you're too tired for that. You walk away from it and feel a peace. You see what matters in life and what doesn't. I believe age does that to us but being ill magnifies it times ten. I use to let people walk all over me but not anymore. I never spoke up when I didn't agree with people and now I can't guarantee what is going to come out of my mouth if I disagree with you.  If someone disrespects me I speak up and I like this side of myself. This includes doctors I deal with and other medical staff. When you deal with the medical field a lot you must learn to be your own doctor. The breathing problems I am having I have had for years. It's disheartening to me as I look back and think of all the doctors I have talked to about it and not once had any of the said anything about doing a lung function test. I should clarify, that is until now. Here comes the part about being in control of you own health. I found my new primary doctor two years back and she is taking such good care of me. I didn't mention the shortness of breath to her before because I figured I had already told so many doctors including my Rheumatologists so why tell her? Boy big mistake and lesson learned. I mentioned it to her at my physical a month ago and she took full control. Tests ordered, diagnosis made, medication started, results of treatment starting to take affect, and I am breathing much better already! Lesson to all of you: If you know something isn't right don't give up. Keep telling your doctors and eventually, sometimes years, someone will help you. It's just a matter of finding your right doctor. Keep opening your mouth you know your body better than anyone.

Looking back on my life, on the past ten years, but especially on the past year all I can think is wow. Wow! How often do I think that? How often do I say that word outloud? Sometimes in a happy tone, WOW! Many times in a disbelief baffled tone. wow. I'm thinking about all I deal with that no one can see and I think Wow. I am one bad ass bitch. That's right I am! My struggle is real, maybe not to the rest of the world that sees makeup, nice hair, and on occasion more than stretchy pants but to me it's real. I have to think of it as an adventure. Maybe an adventure movie where I'm the lead actor fighting off the bad guy. I'm waiting for the ending to come where I finally win, I know it will come, someday. In the meantime I will live it the best I can. I continuely tell myself I'm here for a reason and my work here must not be done yet. Either is yours!

Here's to another year in the books. Cheers!

God Bless!


Monday, November 30, 2015

Fires are Burning

Ronnie Milsap had a hit song years ago about how the man went to work while his woman stayed home and kept the home fires burning, She keeps the home fires burning. What a voice he had. I always loved that song because that is what I always dreamed of doing when I grew up. Falling in love, having children, and staying home to raise them. I was fortunate to have that dream come true. I may have missed out on the world but that was ok with me I was living my dream.

On days like today when that song came to mind it came to mind for very different reasons. Today I woke up fatigued to the max along with some other issues Physical symptoms I won't bore you with. I'm sure many people think, oh well don't complain we are all tired, but this is unexplainable. When I went to bed last night I had a plan for the today. Even as I was sitting drinking my coffee this morning I was putting my plan in motion, at least in my head. I sat for a while and forced myself to get moving. My plan was to vacuum and mop the floors and move onto getting out the Christmas stuff. I did it. I did! I had to push myself to the max and every ten minutes or so I would sit down and collect myself to get enough rest to go another ten minutes or so to make it to the next rest.That's how the day went. Do something, sit, etc. I accomplished more than I thought I would based on how the day started. Tonight I was suppose to go with Rich to a bible study but as you can tell that didn't happen. I jumped in the bath and thought about Ronnie's song and I thought about how much the home fires have changed. These days the fires burn inside my body and there are times I lose my control on them, at least to some degree. I tell you it would have been so easy to crawl back in bed this morning but I chose not to. I wasn't going to let the fire win today but it won tonight unfortunately. That's life when you live with chronic illness you pick and choose. You can still do things but it looks different now. There are times I win and times the fire wins. Frustrating? Yes! Very at times. But then I have to put my head back straight, find the peace, and remember all I can do instead of focusing on what I can't do. If you don't learn how to do that when you live with chronic illness the fire will always win and that is no way to live. Yes I am frustrated today but tomorrow is a new day and for that I am grateful!

God Bless!


Wednesday, November 25, 2015

You Can't Take That

Today I started my day out bright and early, a four am kind of bright and early. No biggy I'm use to early hours with either my body waking me up in sheer pain or my puppies waking me up to eat or pee. It's funny how you sort of adjust to waking up early once it continually happens night after night. I'm one of the fortunate ones because I choose not to work so I can go lay back down at six or seven am if need be. This morning I had no choice in laying back down because I had an appointment for my yearly physical. Ugh right? I can't really say I feel that way anymore now that I have found the best doctor I have ever had. I am not lying on this one. You all might know how many doctors a chronically ill person has dealt with over the years and if not it is many, many, and many more. It seems when you first come to know something is drastically wrong with your body you will go to any doctor, specialist, or otherwise for an answer. It is grueling running from one doc to another, to say the least. Looking back on all the doctors I have been to I can recall appointments where I left crying because of the way I was treated and would call Rich hysterically so he could calm me down. Before I had blood work that indicated problems I was talked to in some of the cruelest ways imaginable, listed here in no certain order and many were said by more than one doctor. You are fine there is nothing wrong with you. Your pain is because you don't exercise enough. You need to eat a better diet. You need to talk to a therapist. You need to lose weight. I even had a sleep doctor tell me I needed to lose 100 pounds. Dare I go on? If I didn't need a therapist before a handful of these docs came into my life I sure needed one after I saw them. You have no idea how much pleasure it would bring me to walk into their offices with my diagnosis and shove it down their throats or better yet up their butts. Whoops my devil side emerges as I usually try to keep that side of me under wraps. I'm human after all believe it or not. 
Fast forward to today's appointment with Dr. Oostema.  When I got there the usual. Jump on the scale, height, blood pressure, etc. Results: weight up a little but no surprise. It's so much easier accepting I am plus size and will be forever instead of beating myself up about it. Height I shrunk another half inch. Blood pressure perfecto! In the past when I would see a doc and my bp was always high because I worried about how I was going to be treated now it's perfect which alone says a lot about Dr. Oostema. I always figure I'll get the weight speech because it happens so often but she has never done that to me. She is the kindest, sweetest, thorough, and most compassionate doctor I have ever been to. I am grateful for her care and not because she never talks weight but even if she did I would still love her. I feel blessed to finally be in the care of some top notch docs who listen to me and treat my issues and don't act like I am like every one else bacause autoimmune patients are very complex. 
Back to the real reason I started to write this blog post. When I began driving home my mind wandered to the past and all I have endure over the past twenty fives years of living with illness and I went to that dark place hashing over all that chronic illness has taken. My health, my energy, my faith in doctors and people (sadly), my sleep, my sanity at times, my joy at times, friends, ability to work, and the hundred other things that flashed through my mind in those few seconds. Then as fast as those thoughts came they were replaced with all my illness has given me. My ability to take time for myself and not feel bad about it, my hope in a cure even if it is my death, my wonderful team of doctors who all keep such a close eye on my health and who lift me up instead of tear me down, the love of my family and a few close friends, my ability to drive and shop even if it isn't an all day trip, my ability to see what really matters and what doesn't, my life is a good one despite all the obstacles I come across. I must say instead of leaving my doctor visits in tears these days I leave refreshed and renewed because they give me more hope than I already have by telling me I am doing a great job taking care of myself. Can I lose weight? Sure I can but can't everyone? Can I exercise more? Of course but I exercise some and that's what matters. No one on the planet can do everything perfectly but trying is what matters. Can I do better with sleep problems? Probably but I sleep the best my body will allow. Point is I do the best I can with what I have to work with. Haha. I thought about all illness has taken away but more importantly I appreciate all illness has given me and that is what I am going to continue to focus on! The ongoing HOPE!

God Bless!


Wednesday, November 18, 2015

My Get Up And Go Got Up And Went

And the autoimmune saga continues. A few short weeks ago i decided along with my doctor to cut my dose of leuflonimide down from 20mg to 10mg because of the side effects I was experiencing. I was hoping this wouldn't be a big deal figuring the drug would still be in my system. Boy was I wrong. The day after I saw my Rheumetologist we decided I had to go off the drug completely for two days before the decrease in hopes that would help with the side effects. I followed the doctor instructions as I always do and within those few days my side effects had vanished as fast as they came. I started the lower dose two days later. The downfall was that my symptom control decreased right along with the medication decrease. After a week my fatigue, that I almost forgot about, returned with a vengeance. Autoimmune fatigue is a fatigue that is very hard to explain unless you have experienced it. Imagine trying to pull yourself through four feet of mud in everything you do. It is debilitating to say the least. Just functioning takes all the energy you have. I am having to force myself to do anything. Literally. I went to swim class the other day and I hardly made it through. In fact I left twenty minutes early and never felt refreshed like exercise is suppose to make you feel, so I'm told. Not for me I came home exhausted.  This fatigue is not a mind over matter thing like when people tell you to get moving and you will get more energy. No it doesn't work like that for us. If we don't listen to our bodies and rest the fatigue will put us down for days. I know this sounds crazy to the real world but to us chronics it is more real than you know. Please understand.
My joint pain and stiffness have slowly returned to the point where I getting out of bed is hard to do. These are the times I begin to feel depressed. Alone in my own hell I begin wonder how much more I can take but then I remember I have a Rheumetologist and it is time to call him with an update. I don't know why it takes me so long to reach out for help. I think it's my will to not let the disease win. I try to wear my badge of honor and courage as long as I can in hopes that the symptoms will magically disappear "tomorrow." The famous last words when you are a sicko. Sadly the disease always seems to win. I sent a message to him when I finally gave into the fact that tomorrow isn't coming. 
My biggest anxiety right now is the holidays as they approach. Entertaining is grueling. I love Thanksgiving but it doesn't love me back. Having people over and cooking throws me into a tailspin for a week after. What I call my recovery time. I don't make any plans for a week after I have a get together because I know my body will need that time to rest. Once again the disease wins. 
Later in the evening my doctors nurse called and told me to increase my dose back up to 20mg so today I will do so. He also gave me a few tips to help control my side effects but believe me if they don't help we are going to have to consider other options for treatment. One plus side to autoimmune disease is there are quite a few options for treatment. It is a matter of finding what works for you and that can take time. Patience.
Yes my get up and go got up and went but I am hopeful it will get up and decide to come back real soon with this increase. Push on and keep fighting because no one else is going to do it for you. It's up to you! Oh and most importantly reach out when you need help. Lesson learned...I think?

God Bless!


Friday, October 30, 2015

Underground World

When I think of the underground world I picture people living their lives outside the lines. Thoughts of illegal activities going on and people running away from what is suppose to be the gold standard of life. The rules are flushed down the toilet and I wonder if the people who live in this made up underground life ever feel guilty or scared. Would an underground way of life make life easier or harder? Why in the world would I think like this? I'm sure it sounds like I am cray cray, I might be a little, but in all actuality I am more sane than most. I over think everything and wonder about how people act and treat one another all the time. Human behavior intrigues me. My thoughts go deeper than the rest of the world when I have encounters with others. The main reason my thoughts went to an underground world is because of a trigger. I had a doctors appointment yesterday that I left feeling very odd about. The appointment went ok but it left me comparing it to the last appointment I had with this doctor. See, this is where my encounters with others goes deep. I can never let my meetings with even my doctors appointments be just about that one appointment. I have to go deeper and compare how the last appointment went or the one before that went. I can never understand people who treat you differently every time you see them. True colors come out when you compare your encounters. After I left the appointment and for the rest of the day the underground world came to mind. The underground world I was dreaming about went something like this. It actually turned into a what if underground world. What if there was an underground medical world? A place you could meet a doctor that truly cared and just didn't want to pass you though the door so they could move on. A place where you could get straight answers to all your questions and have your issues taken seriously. To be fair I know doctors are busy and I don't expect much but it would be nice to leave feeling like I am armed with a plan so to say.  I wonder if the underground medical world could solve this? I wonder why I see doctors at times. True colors showed through when I was left with no Rheumetologist for a few months. No one takes it seriously when you are sick. It felt like oh well sorry you don't have a Rheumetologist but deal with it on your own oh but call if you have issues. Then you call and no one wants to help you. I get more frustrated when I see or hear advertisements on tv or radio about how every health care system tries to convince you they are there for you and they have the best care. I do believe this is true if you are dying but in the real world of chronic illness I wonder. I guess this whole entry is about my frustrations. Although I try to stay positive as I live through this hell there are times I get very discouraged and want it all to end. I know it will someday and for the time being I have to pull myself back into reality and out of the underground world. I have to hold onto to hope that the next appointment I will leave feeling more heard. As a patient my hope would be that doctors would take the chronically ill more serious. It seems at times we are looked upon as complainers when we aren't because we are truly suffering. My main issues yesterday was my feet. The conclusion was it it just the Raynauds so in other words live with the symptoms. Keep your feet as warm as possible. That's that. I read some more on Raynauds and now I can see this is what my problem is and I will do what I can to help it although this is one of those deal with it and basically there is nothing we can do for you. See you in eight weeks. To me I leave and in my head all I hear is I have to live with this for the rest of my life? It can bring you down. It wasn't what I wanted to hear at all. I'm tired of fighting with my body on a daily basis. I'm tired of just being a number in the medical world. When I get like this I have to pull my head out of my ass and get busy doing things that keep my mind off the pain and frustration. Today I'm going to be getting food ready for the weekend because Richie and Leah are coming for a visit. I'll crank up the jams or watch some Netflix. I'll work hard on putting yesterday behind me and come to terms with the fact that it probably wasnt the doctor or medical world at all. It is all me. Me wanting to escape to the underground world where no suffering existed. Ahhh what a thought. I believe the underworld fantasy will bring me to some sort of peace today and for that I am grateful. Keep pushing on!

God Bless!


Thursday, October 22, 2015


The title of this blog entry sure doesn't sound very pleasant or appropriate but the word ran through my head when I woke up at four am this morning with burning pain and numbness in my toes. This is a new issue I have been dealing with for the last month or so that continues to escalate. I plan on talking to my Rheumetologist next week about it and hope to get a diagnosis and some relief. I'm pretty sure I know it is neuropathy but I need to hear it from him. I'm dreading the diagnosis because I read that neuropathy is a side effect of the new medication I am taking and the only way to stop the neuropathy is to stop the medication. This is frightening to me because this drug is changing my life. I have only been on it three months and am happy with the symptom relief I am experiencing. I have done more in the past three months than I have done in the past three years. Once again I have to be careful who I tell this stuff to because for some reason when I write or tell people I'm doing better they think that means I am available to them and able to do things like I use to. Wrong! That's not how it works. I still have bad days and many symptoms I deal with so my better looks much different than what the better means to the real world.  It took me many years to get to a place where I now know it's about taking care of me first and then my family before I can give to the world. Selfish? No way! Reality? Yes! When I woke up at four am this morning and laid there wide awake with Ella snuggled up next to me I started to focus on my feet. I wasn't thinking about the pain because I have learned when you live in pain you fight it every minute. I focused more on the reality someone who deals with chronic illness has to face, the what next reality. The more I thought about it and came up with no answers one word came to mind. Shitstorm. When I thought about the word I thought of something looking like a tornado running through my body giggling like the devil asking himself what part of her should we attack now? I know lets go for the feet that'll piss her off. Mawahahahaha. I know that sounds insane but it's how it is for us. We try to make sense of somethings that will never make sense and we have to laugh about it by making up crazy scenarios in our heads it's almost like a coping mechanism of sorts. When I got up this morning I decided to look up the word shitstorm. Shitstorm: A vulgar dysphemism for a chaotic and unpleasant situation. Dysphemism? Ok Wikipedia way to big word for me. Of course I had to look up that word since my intelligence is that of a third grader. Dysphemism: Expresstions with connotations that are offensive either about the subject matter or to the audience or both. Dysphemism is sometimes motivated by feelings of such as fear, distaste, hatred, and contempt. Wow that was a mouthful. Pretty spot on.  I could spend hours breaking all that down but I'll leave it to your own imagination to figure out. All I know is shitstorms suck. In life there are so many different shitstorms and many of them we create ourselves. We all have those times and those shitstorms are called life. What happens when shitstorms are not caused by you and are beyond our control? That's the part I have a really hard time understanding. The shitstorms that wake me up at four am and keep you guessing as to what will be next. I may never get the answers, you may never get the answers, but we continue the fight. We stay one step ahead of the shitstorm and continue to live our lives the best we can. We love, laugh, give, some days we just breathe, but we never give up! I hope and pray today is a shitstorm free day for you and if not then do the best you can where you are with what you have!

God Bless!


Wednesday, October 14, 2015

Who pushed the button?

I remember back when I was a kid living in a time where making our own fun was all we had. We didn't have toys that worked for us or cell phones and computers to play games. Life seemed so much more simple back then. We rode our bikes a lot and I remember using a clothes pin to attach a playing card to the spokes so when you rode down the road your bike would make the clacking noise. I'm not sure what the thrill was but mostly I think it was the challenge of proving you could get that clothes pin to stay on longer than anyone else could before it would flip off and you would have to search for your missing card and pin only to start all over again. We did this for hours at a time. We also use to make our own fun with marbles, match box cars, and anything else we could find. Erecting things so if one thing hit something else it would cause a chain reaction like dominoes. If we had the car at the top of a ramp it might set off a marble to fall in a bucket. What does any of this have to do with being chronically ill? Before yesterday I hadn't really been thinking about it but last night when I was talking to Rich it hit me as I realized the reality of inflammation on the body. I have been going to the swimming classes twice a week and since I started the class my right foot has been progressively getting worse. I have a lot of problems with my left foot and have for many years so I depend on my right foot to compensate for the left. The plantar fasciitis has set in on the right and I have had to back off the pounding exercise in the pool for a few sessions now to give the foot a minute to heal. As I was talking to Rich about it last night I remembered what a doctor told me after I blabbed on and on to him. The reality that my foot is in a lot of pain forced me to tell him about the pain and swelling in my knee too. My neck has been more painfulI too since this foot thing started. I haven't been sleeping well at all because the night time pain throughout my body is causing me to toss and turn trying to find that sweet spot that is hard to find when inflammation is on overload. I explained to Rich as I have a hundred times that for most people who deal with plantar fasciitis that's what they deal with but for someone with inflammation an issue like plantar fasciitis sets off a war throughout your whole body. It pushes the buttons so to speak, hence the whole body pain issues. I never would have connected this had it not been the doctor I use to have who helped me with my neck and hip pain issues on a weekly basis. He use to tell me he had to be more careful with me because of the fact that working on someone like me can set off more inflammation. I sure do miss him because on weeks like these I would go see him and he would work on my muscles and give me some relief. Inflammation for me is like those games I use to play as a kid. The domino effect. One thing starts and another is set off. It is not only a physical challenge but a mental challenge. It is so easy to give into the, "I really don't feel like doing anything today," self talk when I feel like this but I can't. Rest is what I need but then mentally I feel like a failure. Yesterday I woke up later than usual because I had finally found a position that allowed me to sleep for a few solid hours. When I got up I sat in my chair and had a hard time getting my body going. Finally I told myself get up now! I did and in my usual fashion I talked to Eva because she follows me everywhere saying, "We are getting a late start today but at least we are starting!" Would it have been easier to sit down a majority of the day? Yes, but there are so many things to do why waste it sitting and feeling sorry for myself? I won't fall into that, ever. I'm in control of the buttons and I decide which ones get pushed, at least when it comes to the mental and emotional side of chronic illness, the physical not so much. I woke up today and the foot feels somewhat better than it has been. I've been doing art projects so the rest of not walking so much is paying off. Time will tell when the inflammation decides to subside and I can return back to my usual daily activities, until then I will win and continue to control which buttons are pushed!

God Bless! 


Saturday, October 3, 2015

Socially Inept

We are very fortunate to live in the Grand Rapids Michigan area for many reasons but one of the best reasons is Artprize. If you have never heard of Artprize it is a huge event in the city where artists from all over the county set up their masterpieces in businesses, museums, and on the streets. The artists compete for the $500,000 in prizes and the recognition of their talent. You will find any and all types of art at Artprize and many pieces will stop you in your tracks because they are so amazing. I love the fact that the artists are at their venues to share and delight with the crowds that come down to see thier work. In the normal/real world most people head down to Artprize for hours and roam the streets to enjoy the art but for the chronically ill person it isn't that easy, at least not for me.

It is the times like these that the harsh reality of my illness hit me like a ton of bricks. The reality of my life comes crashing down full speed. I become angry and bitter and quite honestly mad at this illness crap. In my head I stomp my feet like a two year old having a tantrum when they don't get what they want. I don't understand how unfair all of this is.  Rich took the day off yesterday so we could go to Artprize. All week he kept saying, "We will do however much you can handle." Like I have mentioned before when I go to events like this or any social event for that matter it isn't about just planning what time we will go and where we will go after. For me it is like Rich said, "Whatever you can handle." All week in the back of my head I was going to handle it well. I psyched myself out with the constant thought of spending the afternoon there. I was going to last and try to see as much as possible. Then reality hit yesterday when we got there. Don't get me wrong I was still hopeful I would make it for a better part of the afternoon, my hopes were high. We started out at the Amway Grand Hotel and Devos Hall which I was told by my parents to make sure and see. These two venues are quite large so it took a while to walk through it all, so it seemed. We decided to go during the week because we figured the crowds would be smaller but that was a pipe dream. It was crowded so it was hard to take any significant amount of time at the pieces that you needed more time to absorb and admire the artistry. There were many pieces that needed the time believe me. By the time we were done with those two venues I was done. In fact I gave into the fact that there was no way I could do much more. We decided to walk down to the Bob which is a large building with many restaurants in it. It has a large parking lot area by it that is usually filled with the larger art pieces. We walked the few blocks to get there to find nothing was there. I remember looking at Rich and saying, "Are you kidding me?" The real world would think oh well let's go somewhere else, the chronically ill think I just walked two blocks for nothing? Energy used and burned for nothing? It was then and there I knew it was over for me. I asked Rich how far the car was and he told me and then offered to pick me up and told me to wait for him on the corner by the Bob. Of course I would never give into that. If I do illness wins and that is never going to happen. We started making our way to the car, got to the elevators in the parking garage, made it to the car and jumped in. It was 1:15. When I looked at the clock I was sad and shocked. Sad because of the fact we got there at 11:30. Do the math. It felt like hours to my body. After I ran the time through my head and did my own math I told Rich, "I am pathetic, not even two hours and I'm done." Of course he said something about it being fine and that I did good but truthfully I can't remember exactly what he said because I was still beating myself up over not even lasting two hours. These are the times no one could understand what it's like living with chronic illness, especially me. 

We had plans to find a place to buy some apples and headed on to our next destination. I decided I had to leave all my sadness and odd sort of guilt behind. Move on and quit analyzing it all. I made it to Artprize. Yay! I haven't been there the last two years so this was progress! We talked about making another trip down there. We figured if we find places that have many pieces to see there wouldn't be quite as much walking. We have the map now and will be able to map out a plan. We talked about a few of the pieces we really liked which put that hope I like to hang onto back in my heart. Take that chronic illness you will never bring me down so bring it on! Until we meet again Artprize!

God Bless!


Wednesday, September 16, 2015

Making Life Easier When You Live With Chronic Illness

We all know life can be hard at times but when you live with a chronic illness it's hard most of the time. Therefore you must find ways to make life easier. A friend sent me a message the other day and asked how I get through Christmas which in turn made me think of all the other ways I must break my life down into manageable parts in order to get everything done. Who am I kidding things never get done. The first thing I have to say is that I am extremely fortunate I do not have to work. I cannot even imagine keeping everything up if I had to leave the house everyday and use the little amount of energy I am afforded by having to do either a physical or mental job. I never take that blessing for granted, ever. That being said there are still days I long to be in the world but it takes one outing to slap me back into my reality of pacing myself. So here we go these are some of the things that work for me. I think? I should say these are some of the things that help me.

It only seems fitting I start with Christmas:
I always try to keep Christmas dinner simple. Of course I would go straight for the food who cares about all the other stuff. Seriously though, one year we had Jimmy Johns subs. Last year I made a huge pot of spaghetti and meatballs a few days before. I always try not to plan anything the month of Decemeber so I can conserve my energy for my immediate family on Christmas Eve and Christmas Day. They are my world so they come first. We usually have a few favorite appetizers and of course wings with our easy meal. The past few years I have tried to keep gift giving as simple as possible. Giving the kids cash has helped immensely. Who doesn't love spending their own money and buying what they want instead of some lame gifts I pick out. Stuff has never been that important to me so obviously I am a terrible gift giver. The grandkids are the exceptions. We do buy them stuff but always try to keep it somewhat educational. Another thing I do is as soon as I/we buy a gift it gets wrapped. I do not let it pile up so I have to wrap a ton of stuff all at once. I get anxiety just thinking about that. I really don't enjoy Christmas at all. While other people are all jolly and nice to each other I am a Scrooge waiting for Decemeber 26 to arrive. I enjoy the reason for the season but I think it has gotten so out of hand with people thinking they have to buy all these expensive gifts to show their love. Yes, I'm weird but I'm okay with that. I also use online shopping as much as possible heck I do that all year round. It's wonderful. I try to keep my regular sleep schedule and try not to stress to much. It turns out how it turns out anyways.

Cleaning the house:
What is that? I always say,"You mean you're suppose to clean your house?" Ok that's not totally true I do keep the bathrooms clean and vacuum and mop once a week but I don't have a cleaning day. I pick and choose little jobs at a time. Dusting might not happen often but it happens. Baseboards are gross and need to be done someday but who cares? Plus 
what if I die tomorrow? I'm sure no ones going to say, "My gosh her baseboards were discussing." You have to accept what you can and can't do and be okay with it. I have! Who cares.

The bed:
I wash my sheets regularly I'll leave it at that. Once a week? Sometimes. For sure every other week. Hey, we go to bed clean every night so they can't get that dirty can they? Beside changing and washing all the bedding is a nightmare. If I'm doing the bed that's what I'm doing that day, the bed. It is by far one of the hardest jobs for me. There are times I have to lay on the bed to rest in between putting the sheets and blankets back on. I know that sounds crazy. Crazy but my reality. 
Make the bed everyday? What's that? Are you kidding me? Why on earth would I make my bed, for me and Rich to see? Neither one of us cares at all if our bed is made. On the rare occasion that I do make it, because people are coming over, it's not like Rich says, "Oh honey thanks for making the bed it looks devine." So screw that. In fact when people do come over I whine to him and say, "Crap that means I have to make the bed." He always tells me, "Don't make it. Just keep the door shut." And you wonder why I love that man! 

Speaking of the bed... But really, Just Do It! I know pain can be an issue but there's always a way to work around that. Nurture your relationship and treasure what you have together. Enough said, that's as much as your getting. Haha

I leave stuff out basically scattered all over the house. In the bathroom I have a huge basket I keep everything in that I use each day. Why put it away one day when I know I'm going to need it tomorrow. It takes energy to search for things. Most of the things I use each day are out in the kitchen too. It's not clutter it's reality. I go for easy. Why not? I live here. I keep the things I use most in the cabinets on lower shelves and at arms length. It just makes life easier that way. I get cold easily so at any given time there are sweatshirts on my kitchen chairs and in my car. Leave things accessible to your needs. If someone drops over who cares. Put your needs first.

Ask for help:
I hate this one. Being a type A person it is extremely hard for me to ask for help. I only ask Rich for help when I am forced to do so and when I do I always refer to it as "We" need to do this, that way I still feeling like I am doing it and in control. I'm pretty sure he cringes when he hears, "Hon WE need to do this." I always put the emphasis on the WE and chuckle out loud. He knows why. Of course he never shows it. Ask your people to help you. Admit when you need help and ask. It makes life so much easier instead of beating yourself up for not being able to do it alone. I know it's hard. Being ill takes away enough independence and asking for help and admitting you need it isn't easy but it's ok to do so.

Getting ready to go away.
Plan! That's a all I can say. Only you know the amount of energy you have when you have to be somewhere. For me taking a shower and then getting ready is exhausting. I always take a bath before I go to bed at night. Always. If we have plans the next day that means all I have to do is hair, make up, and get dressed. Which we all know takes a lot of energy out of us chronics. By the time you get to where you are going that evening you are already tired. I break it up into pieces. I will do my hair earlier in the day so that is done. Then a few hours before we go I get dressed. Then I rest for an hour or so and do my make up. I always mentally pick out what I am going to wear the night before, pick it out, put it in the front of the closet, so when I get up that decision is made. Baby steps if you will and again whatever works. On a normal day home usually get dressed right away. I lay my clothes out the night before so I don't have to fumble through to try and find something to wear. After my tea I do my hair and slap on a little makeup. I figure if I'm staying home for the day why do I need to get all dressed up. It's all about comfort. I love my stretchy pants and a tshirt or sweatshirt. 

Dinner and snacks:
Cooking can take a lot of time and can be very exhausting. Simple is my motto. I try to always make enough of what we are eating so we can eat it two nights in a row. I love making large pots of soup because we can get three nights out of that. Subway is always nice to do on occasion. Rich will pick it up on his way home from work and dinner is done. I'm fortunate he isn't a picky eater and if there is the occasion I don't cook he could care less. He will pop a turkey burger or something in the mic and be happy. Snacks are always grab and go. Bananas, yogurt, cheese stix's, etc. anything simple. I don't buy junk food at all except when the grandkids come. I like cup a soup too that makes a low cal snack and you feel like you ate something. You adjust to your likes and dislikes as long as it doesn't consume your energy it's only a snack after all. Try to keep breakfast and lunch simple too. I like a sandwich or something else that is easy to make. 

Having company:
This can be tricky. We don't do it very often because it is a huge energy zapper. When we do have company it takes the wind out of my sails. I have learned to never make plans the day after company comes because I know I will need it to recover, sometimes two or three days depending on the get together. Ask everyone to bring something people love to be told what to bring. This is hard for me. I have always been a do all person but I am learning to ask people to bring a dish when they come and I must admit I'm beginning to like it. We always grill when people come over because Rich mans the grill and it  is one less thing for me. I always prepare a few days before, sometimes the week before,  getting all the dishes and other stuff ready and try not to cram everything into one day. Spacing things out helps conserve the energy you need to talk to everyone who comes over. We do everything early because we like people to leave early, at least I do. If people stay that means my sleep schedule gets totally screwed up which in turn causes more issues for me. I figure if I'm entertaining I can make the rules. Early it is.

Keep a good sleep schedule:
I learned this from a sweet friend Lisa who has rheumatoid arthritis and myasthenia gravis two diplitating diseases. She always said she keeps a sleep schedule and tells everyone not to call her after 8:00 pm. She knows how important sleep is for her and she takes it very seriously. This is one of the best tips I have ever heard from anyone because it is so true. I do my best to get in bed early each night. After hearing Lisa talk about sleep I began to be aware of what impact sleep had on me. It is very important so be aware and make time for it. Make your bed as comfortable as possible. Use pillows if you need to. Prop up whatever needs to be propped up. Do whatever it takes to make sleep comfortable because it will help your day to be better. If you need a nap during the day then take it. This is hard for me because I've never been a nap person but there are days I need to shut my eyes for a minute and just rest. I am learning it is okay to do. 

Learn to say No:
This is a hard one to learn but once you start to do it it gets easier. You don't need to explain anything to anyone. When asked something just say that's not going to work for me and move on. It's for your health so just do it. NO! If people don't understand they are not your friends and you will learn to be okay with that too. 

Let things pile up:
Who cares? There are some nights we go to be with dishes in the sink and guess what? We wake up the next day and they are still there. It's crazy they stay right there until the next morning when I have the energy to do them. It doesn't happen often but it happens. The same goes with laundry. I'm usually really good about keeping up on my laundry, washing it and putting it in the dryer but then it stops. It never fails every time I open the dryer there they are the dreaded clothes I left in there the day before. No harm done. It's just clean clothes so who cares on that one too. It's funny how everything eventually has a way of getting put away somehow someway. 

This is another, just do it. I know it isn't easy believe me I've heard all the excuses and they have come from me. The important thing is to find what works for you and stick to it. I believe we beat ourselves up over and over when it come to exercise. If we can't do thirty minutes at a time, like we are told to believe, we push exercise under the rug not realizing even a ten minute walk is good for us. Start slow and build yourself up. If you start to walk walk for five minutes and add one minute to that the next day, the next day another minute, and so on. You will figure out your number and what you can handle. Listen to your body especially after the walk and if it's too much scale back for a few days. Moving and doing anything is better than sitting. For those of us with arthritis sitting only makes the pain worse so don't sit for long spans of time even moving around the house is a form of exercise. I believe the world makes us believe we have to run on a treadmill and kill ourselves doing it but for some of this doing so is not possible. Once again do the best you can and don't beat yourself up. Plan for exercise just as you do for everything else in life. Exercise for the chronically ill is not refreshing like it is for those without chronic illness. I have found the pool is the easiest for me it is so much easier on my body than any other form of exercise. On the days I don't go to the pool I walk sometimes only fifteen minutes but I do it. There are days I might walk ten to fifteen minutes in the morning and then another fifteen to twenty minutes at night with Rich it just depends on the day. Don't forget one day at a time and do the best you can. Block out the worlds messages on one size fits all for exercise because it doesn't. 

I'm sure there are many things that could be added to this list. Your list might look a lot different than mine and that's okay. My main point is don't be so hard on yourself because I'm sure I'm doing enough of that for both of us. Hang in there and push on!

God Bless!


Blessings Through it All

Yesterday my head was running my life. In fact the past few weeks I could feel my anxiety mounting slowly, so slowly that I really didn't notice it was rising until yesterday. I woke up yesterday so anxious that all I could see was the negative that was happening in my life. I forgot to remember how blessed I really am. 
I realized the anxiety started when I received a phone call from my new Rheumatologist a few weeks ago. Don't get me wrong when I hung up the phone I was glad I got the call but as soon as the gladness came it disappeared. Why? The appointment is three months away. I'm sure most people think what's the big deal? I would probably think the same thing If I was reading this and it was someone else writing. Problem is it isn't someone else it is me. We all know nothing is a big deal if it isn't happening to us. Which is sad to me but that is the way life is. Before when I was stabilized on my medications I was seeing my Rheumatologist every three months and when I continued on the same level of symptom control it was bumped up to six months. That first time my doc told me we could wait six months for the next appointment felt like Christmas for me. Like I was handed the best gift ever. Now waiting three months for an appointment  seems like an eternity. I was seeing my last new Rheumetologist every month trying to get stabilized on this new medication which hasn't been easy at all. I continue to struggle with side effects that make it hard for me to leave the house. I wake up everyday telling myself today will be the day I feel better only to realize that maybe today isn't the day. All I want is a half way normal life and wonder if that is too much to ask? The stress of a new doctor for me is horrifying. I just lost my fairly new Rheumetologist and we clicked well. I don't know what else to say. I don't have a lot of faith in too many doctors. I have been treated badly by quite a few so meeting a new doctor and getting him on board with all I deal with is nothing less than sheer terror. How crazy does that sound? I mean really it's just a doctor appointment. True but for me it is like preparing for a life changing exam. I have to prepare for days. There is so much to write down and remember to tell the new doc that it becomes overwhelming. I put it off as long as I can because in some odd sort of way if I put it off it will all go away. It doesn't and I realize this is such a silly way to think. It has to be some sort of coping mechanism or just the way my brain wraps itself around all of this. On the blessed side I have an appointment! 

My anxiety definelty got the best of me yesterday but today I thought to myself, SHUT UP!  Every time an anxious thought comes to my mind I replace it with a good thought or a blessing in disguise. I went for a walk this morning and enjoyed nature. I played with my puppies and that always makes everything better. I'm going to do something's around the house and I am thankful for the little bit of energy I am blessed with today to do that. I'm looking forward to a weekend with Rich to get ready for deer hunting season and playing together in the woods. I realize with all my illness anxiety there is so much more goodness I am blessed with. If this is as good as it gets for me I am happy with it. Could it be better? Of course. I'm sure no matter how blessed someone is they can always say or think things could be better. It's the way we think as human beings. Life isn't perfect for anyone whether they deal with a chronic illness or not. In the end it is all in the way we handle it. Good days. Bad days. Days somewhere in the middle. We take what we get and do the best we can. We are blessed!

God Bless!


Tuesday, September 8, 2015

That's the Way it Is

Celine Dion has a song called, That's The Way It Is. There are so many times that chorus runs through my head almost like there is a tape player running over and over in my mind. Today was another one of those days I heard the tape. To be truthful that choirs has run through my head many times over the past three weeks and two day. Yes, I do have a mental time calendar that keeps track of the bad days when they hit. Funny how that happens when you struggle with being ill. My motto has been for years, it is what it is, and that could quite possibly be where the Celine Dion replay came into play but I'm not sure. Over the past three weeks I have had some okay days scattered in with the not so good and I tried to take advantage of them. The weird part is that when I don't feel so great if I am home I am at some sort of peace. I know if I get sick I can sit and relax and that brings some odd sort of comfort to me. It's usually not until I leave the house that I realize how awful a day can be. I'm sure if that sounds really odd but for me it is real. Last night it seemed like all of the sudden a switch got turned on and I became weak and tired. I woke up this morning feeling the same way I felt when I went to bed but it couldn't be so because I had a plan for today. I was going to get back to my swimming class and get back to "my normal." I forced myself physically along with the self talk to get ready. I got dressed, did my hair and makeup, put on my bathing suit, packed my bag, grabbed my small grocery list, and headed out the door. All the time using my self talk, "You can do this." I hit the road running with my Cheap Trick CD in the CD player. Telling myself once again, "You can do this!" I had the plan, stop at the store first because I knew I would be weaker after class. Feeling weak I changed my plan, go to swim and if there is enough energy left stop at the store. You see, that's how it is for us chronic's we are forced to change our plans on a dime. I got a few more miles down the road and began the war in my head, asking myself if I really thought I could handle an hour of swimming as weak as I am today. I knew the answer before I even left the house this morning but it was like I had to prove something to myself for the bazillionth time.  Back and forth mind games forced me to admit the swimming wasn't happening for today but there is always Thrusday. I'll go Thursday! I had already passed the store but when I made the decision swimming wasn't happening today I pulled in a parking lot and swung the car around. A sad moment for me but also a real moment for me because that's the way it is. I got back on the road felling okay with my decision as I knew if I over did it I would pay even more dearly. I also felt I needed to make the store stop. I really need groceries but the few things I ended up getting would have to do for today because that's the way it is. I cut up tomatoes and peppers yesterday to make more salsa and here I am home doing that, so for me this is a successful day! I am accomplishing something. The ability to stop and rest as needed being in the comfort of my own home helps tons. I don't think the swimming group would understand if after fifteen or twenty minutes I got out and told them I needed a break. The last time I went I ended up leaving twenty minutes early and that felt odd especially since everyone in the group is at least twenty years older than me. Try to deal with shit like that in your head. I continue to tell myself the important thing was I went for forty minutes.  Focus on the positives!  Who cares if I missed twenty I made it there.
It's hard when you are ill because the production to just get there and get home takes a lot of energy but that's the way it is. Mentally trying to accept that's the way it is can be a challenge in itself. I personally try my hardest to always look at what I did do instead of what I couldn't do. it's not easy but the my cheerleader and the one who understands it most, Rich, will boost me up and say things like, "Wow you made more salsa that's awesome!" He always help me to realize I am way to hard on myself when I expect too much by trying to keep up with everyone else my age. He helps me realize and understand it isn't possible and that's the way it is. 

I sure do hope that no matter what you are dealing with in your life you are able to say to yourself, That's the way it is!" In the end it really is true. We do the best we can with what we have been given or maybe with what we have been not given. A crappy body that attacks us every minute? Bring it on! We have to believe we are not alone. We have to believe what we are each dealing with is real and it is our own personal fight no matter what the world might say. I really despise when someone says, "We have to remember someone else always has it worse off." It makes me feel like what I deal with is trivial, it isn't. It's my fight and it sucks and it's not easy. I believe that phrase makes them feel better because it sure doesn't make me feel better. So here's to all my chronic illness sufferers and those who love and support us, "Thats the way it is," and we will keep fighting no matter what!

God Bless!


Tuesday, September 1, 2015


I woke up this morning and as I laid there for my usual half hour contemplating getting up I thought about the past two and a half weeks and I became frustrated again. I hate to keep beating this to death but it is what it is. Hold on for a little more babble it gets a little better. The voices in my head argued as I laid there. The number one argument was about the medication I'm on and the very unwanted side effects that are affecting everything I do lately. I laid there willing myself to get up while fighting the urge to go back to sleep. I fought with myself about just stopping this stupid medication. I mean what's the point anyway without a Rheumatologist? It's so easy for me to go there, that place of giving up. I realize I am a quitter. When things don't go my way I want to throw in the towel and forget it all. I'm learning I have been a quitter all my life. A good self realization for me. The best part of being chronically ill is you learn so many things about yourself you would never learn if you were actually living s normal life. Wait, is that good or bad? 

I remember when I was in elementary school and I use to love to clean the chalkboards. I would beg my teachers to let me clean them with water because truthfully I hated seeing the marks that were left after the chalk was erased with the eraser. I loved how they looked after the teacher told me yes but, I also dreaded the fact that she would pick up the chalk and the whole process would startover again. The perfectionist in me I guess. There are many days I wish I had a huge 5'6" eraser so I could erase illness from my body. Better yet a big bucket of water to dip that eraser in so the illness would be clean as ever. Ha, then the reality hit me that no matter how many times I tried to wash it all clean it would always come back. Funny how autoimmune disease does that to you. It doesn't care how nice or good or giving you are it attacks and at times when it is least expected. I fought a little more with the voices, and prayed for answers from God. I finally rolled myself out of bed and started the process of waking up and getting moving, not so easy with someone who has arthritis but hey I'm still breathing so there is no other option.

The day started as it usually does except today there was a huge basket of tomatoes on the counter that needed to be taken care of. It's always good for someone like me to have things waiting for us it keeps us going. I know that is true for most but for sickos it is a little different. Hard to explain. I started salsa and was in the middle of cutting up the stuff when the phone rang. It was my doctors office calling about finding me a new Rheumatologist. You know you are chronically ill when you get some odd sort of excitement out of calls like this but right now I need a Rheumtologist. It is hard flying blind with no doctor to call when I have questions about this new med, and about blood tests that are running high. This is another reason I was arguing this with myself this morning because my questions and blood work are flying in limbo with no one monitoring them. I don't like this at all but after the call I felt my cry to God was answered. The conversation about the referral went very well.  I was able to give her much more insight as to why I needed an appointment by October and she took detailed notes to pass along to the rheumatology office.  

Hope! Hope that always keep me going. Hope that always comes from despear. It's funny how that works but also magical and wonderful. My cries out to God always seem to get answered, many times not in my time frame, but answered none the less. I truly believe that call happened today because I am not suppose to throw in the towel on this treatment plan. I am getting relief and feel I have been given back life, somewhat. Doing so much more than I did just a few months ago. Receiving texts from my son last night about the medication that give me hope. All the people around me who love and care about me at times like this give me even more hope. When I become down and the tears roll down my face I hang onto the hope. I wait for the call to set up the actual appointment and in the meantime enjoy the ride no matter how bumpy it is. 

God Bless!


Friday, August 28, 2015


Let me start by saying that being sick can be extremely frustrating and stressful. It's no wonder so many chronically ill people have anxiety. I'm not blaming anyone for anxiety but one thing after another forces a person to become more anxious. You are always second guessing yourself as you shift from one issue to another. I began feeling better yesterday from my now thirteen day stomach issue that I still have no answer for. I called my doctor Wednesday to see if I could get in for an appointment but they couldn't get me in until today which is Friday. Totally understandable. What I have a hard time understanding is that when I canceled today, because I am feeling better, I was told it would be put down as a no show and I would get a letter telling me so. There is no charge but it will be written down and remembered I am sure. I can understand why they do this as I am sure there are people who cancel a lot but I am different. Ya I know everyone they are different but... It takes me to be really ill to call for an appointment with my doctor. I had a physical last Novemeber and I have only been in the office twice since then with this being my third appointment. Amazing considering my medical issues, if I do say so myself.  This is the first time I have ever cancelled an appointment that I can remember. I know it isn't the offices issue and more than likely they are doing this with all offices at Spectrum but when you are chronically ill it seems like there should be some sort of exceptions made. When you call and you are really sick and can't get in its not like we write them up. Frustrating! Oh well I will wait for my letter like I was a bad child in school and see what my punishment will be if I continue my childish behavior.!? Frustrating. 

Yesterday I received a call from my Rheumatologists office telling me that he was no longer going to be joining the Spectrum Medical Group. My heart sank especially since I feel like I finally found a doctor that was working with me and understands my disease process. I guess not. The lady that called me had no idea where my doctor was going and encouraged me to call the last office he was at last to see if they had any news on where he would be going. Of course they said no so now I am here again grasping at straws wondering who will be my new and third Rheumatologist. I hung up the phone with a near panic attack and sent Rich a text. He called me back right away and I sobbed. Per usual he calmed me down and told me to see what my primary doctor had to say about it. I sent her as message and she said she was going to find a new Rheumatologist to refer me to. Now I wait. I know there are a few Rheumetologists in the area but there are very few and it takes a long time, months, to get into them. I was scheduled on a monthly basis with mine and I am afraid a new one will be a much longer wait. Normally I would try to be patient and not freak out but with starting the new treatment and with my blood work results showing increased inflammation this past week I feel I need to see one on schedule. More unwanted and unneeded frustration.

I'm sitting here thinking to myself that I have to put a positive spin on this, wondering what it might be. Just because I am a positive person most of the time doesn't mean I walk around in a candy cloud happy all time eating pixie stix's, I don't. I become anxious and frustrated very easily when it comes to anything medical. I wish I didn't but the reality is I do. I self talk and tell myself it will all be okay eventually or I shout out to Rich for him to bring me back to reality like only he can. These are the times that are hard. The times the fight between me and chronic illness becomes even more real. These are the frustrations one does not need. I'm sitting here at the end of this post beginning to chuckle about the letter I'm going to receive. Writing all of this helped me get a little frustration out and realize I can't take all of this too serious because in the end it will all work itself out somehow. I'll get my hands slapped with the letter and I will more than likely find a new Rheumetologist. I can hear the words of Rich in the back of my head telling me to settle down it will be fine and I begin to feel better. I start to believe it really will work out!

God Bless!


Sunday, August 23, 2015

Pain Please Pick on Someone Else

The dog woke me up at 5:00am and that's when all hell broke loose. I knew I wrote in my last blog entry how I became so ill at the farmers market a week ago and had to come home and go to bed but today I was in bed when a new pain struck me again. If I was younger and didn't have all my lady parts I would have thought it was a cyst or something like that but I know that isn't possible since I've been gutted out and don't have too many parts left in my body. I laid in bed from 5:00-8:00 self talking and wondering what the heck is going on now. Is this connected to last week as I haven't felt well since that happened? Is it my appendix or a UTI? You see when you are sick all the time you don't wake and and decide to go to urgent care or the ER, you wait it out. You tell yourself the pain will subside and there are times it does but then there are the times it doesn't. It's been four hours and I'm still having stabbing pains . My next line of defense is a hot bath. When you are in a lot of physical pain, at least for me, a steaming hot skin scortching bath can cure just about anything even if it's only for a short period of time the pain subsides. When you live with chronic pain those little spans of time whether it is ten minutes or and hour with no pain are heavenly. In fact there was a few minutes of that this morning when I laid in bed without pain and I took a minute to soak it all in. Ahhhh no pain. Asking myself in almost a question form, "So this is what it's like to have no pain?" I'd give almost anything to have more of those minutes added to my days and night but that isn't how it works for me. Once again I wonder why God would put this soul in such a weathered body . One question I will ask him when me meet and he better not tell me it's because he knew I could handle it. I'm sitting here with this come and go pain writing in my blog which to me seems ridiculous. I feel worn to the core, I didn't sleep well, and whatever is going on is stabbing me again. My blog? Really? I made the mistake of telling Rich when I got up about what was going on. Don't get me wrong he is always my biggest supporter but after all this time he tends to become way overprotective when I tell him something. His thought is I'm dying and need to get to the ER. Ha it cracks me up but it also is hard for me when he does that to me. In fact I told him I never should have told him but I'm pretty sure my pain faces would have given it away anyways. His first words were that my appendix exploded which I'm sure if it did the pain would be constant not intermittent.  His best response by far was, "What if it's cancer?" Oh my gosh I'm laughing writing that. Plus if it is cancer it is no use getting all worked up about stuff until you know what's going on. This is all I'm writing for now but I will be back later with an update.

Well, it's 4:20pm and here I sit in real time at the urgent are. The pain is still intermittent and has been all day so I decided I better get it checked out. The worst part is the fact that the wait at the urgent care is one hour and twenty minutes which we all know means at least two hours. Don't get me wrong I usually don't complain about having to sit and wait for the doctor when you are in pain, tired, and weak is not where one wants to be. So I wait.

I'm home now but I made it in the room to see the doc in an hour so that's not so bad. Peed in a cup urine as clear as water which I knew when I saw that there was no infection. The doctor came to the conclusion that I must have pulled a muscle in my pelvic area and it is affecting a nerve hence the stabbing pain. Seriously when I got home it was attacking me and it brought me to tears. I never, well never say never, cry from pain. Here is my conclusion if this is what it is. We went to the Binder Park Zoo yesterday and walked for four hours straight. I knew the whole past week that I was going to pay dearly going to the zoo but I only thought with the usual. When we got in the car To come home ripped off my $500.00 shoes and insert combo, yes you read that right, because my feet hurt so bad I could hardly stand it, especially the left one that has been a continual issue for so many years now. They say you get use to the pain over time, that's BS, you don't. My elbow pain was horrendous I moaned trying to get comfortable for the hour and a half drive. My knees, especially the right one, was swollen and painful. I try not to complain to Rich but when you have so much pain you have to talk about it. We pulled in the driveway and I hugged my dogs and ran for the bathtub. Steaming hot luxury. I kept adding more hot water and more and more, heaven to me. I got out and went for my chair to rest but had a crappy night sleep. Pain like that always wins and you can't fight it you just have to give into. Then the 5:00am fun pain began and here I am exhausted from that pain. I'm glad I was able to sit a little more today at a friends baby shower and in the urgent care waiting room. Rest is a close friend.

I'm in my chair once agin after steaming hot bath #2 today. The pain got to me because I was shivering and teeth chattering when I got home, something that happens to me when I have pain I can't control. I took the ibuprofen and plopped in my chair. I sit here pondering on the last 24 hours of hell, my hell. It reminds me that there is a lesson in all of this too, isn't there always? Normalcy. The normal world goes to the zoo or anywhere else for that matter and when they get home the day is done. The next day comes, life is planned, and lived without much thought. Chronically ill people go to the zoo and pay dearly, often times for days. This is the classic example and if you don't believe it's true please re read this blog until it makes sense. It sucks but it is our normal. A normal I'm sure most people wouldn't want to live. Time will tell what's next.

God Bless,


Wednesday, August 19, 2015

Life as a Sicko

You never know, that's my motto, because you never do know what is going to happen when you are a sicko. I have to laugh every time I describe myself as a sicko because most of the time I use that word to describe people who do creepy stuff like child abusers, wife beaters, people who physically hurt others because things don't go the way they think they should, but I'm sure we all fit in that last category at one time or another even if we don't physically abuse people. 

My sicko sucks. Plain and simple, sucks! I'm tired of not knowing. I'm tired of waking up feeling okay and having the day turn into a small hell on earth. Although I personally believe  any kind of illness really is its own sort of hell on earth. The worst part is that even when a person wakes up feeling okay the illness is still there. Last Saturday turned into one of those hell days for me. I woke up feeling my usual, okay. I sat with Richie goofing off as we usually do and all of the sudden I got really tired like I could have gone back to bed. Weird but I pushed through it because we were going to breakfast and the farmers market for fresh produce. You have to take advantage of this time of year in Michigan because it is such a short time. We made it to breakfast, ate, and headed to the market. As we were walking in the market, BAM,  I thought to myself here it comes my IBS. I eat I pay that's just how it is for me but this seemed different. My colon was spasming out on me. I hardly made it through the market but I made it, forcing myself through and telling myself I could do it. I hate being the one who wrecks things for everyone else like a bad party crasher. We got in the truck and I told myself we will be home soon which in reality was probably a twenty minute drive but when you are in misery and away from home self talk is critical. When I get sick like that it is hard to talk or process what other people are saying. I kept my eyes home and continued the self talk. Closer, closer, ahhh we are home. There's no place like home takes on a whole new meaning when you are a sicko. I made it! I can't tell you how many times I have said that to myself after suffering in misery. I was so wore out from the pain I had to go lay in bed. As I have said before that is never on my agenda no matter what. Bed is for night sleep and I will not give into using my bed other than for night but this time I had no choice. I slept a few hours and felt somewhat better. Today is Wednesday, four days later, and I am still not feeling like my normal sick but better than I was. I am thankful for that! 
Then comes the after effects and I'm not talking the physical ones but the mental ones. The questions of why this happened. You see, when you are a sicko you are always trying to figure out why new or reacurring suffering happens. What caused this? I have been going over this in my head since. Was it because I ate out and there was a lot of grease in my omelette? Maybe. Was it because I'm not use to getting up and getting out of the house so fast? I doubt that one but it could be. Was it because I refilled my arthritis medication and it was a different manufacturer this time? This is the main cause in my mind. I am extremely sensitive to medications and something as simple as the same pill made by a different manufacturer can set me off. That's another thing with us sickos we are nothing like the real world when it comes to almost anything. I always present differently than the healthy world when it comes to illnesses. Sickos are often called zebra's in the medical field where the rest of the patient population are considered horses. We are different. Believe me we feel like zebra's too and we hate it but it is what it is. I'm still not certain as to what happened Saturday and I fear this is a new issue I may have to deal with. I hope not and I pray this was a one time thing. If I have to add this to my list of physical problems I'm not sure how I will deal with it. It's hard being a sicko and the worst part is days like last Saturday scare you. Wondering if it will happen again and where you might be can eat you alive. It makes it so hard to live a normal life. Most of the time I am able to choose where I want to go if I have to leave the house but other times there are events a sicko cannot avoid. What happens when a sicko becomes ill at one of those events? I try not to do that to myself but this is real. Real for me anyways. It makes life hard to live. My anxiety starts to kick in and I have to bring myself back down to reality. The acceptance. I have to use that self talk that if it happens I will deal with it when it does. The main reason I don't go to many places without Rich. He saves me at times like those. The other day riding home from the market I could hear him say, "We are almost home," a few times. I can't imagine how I would have driven home in that state of suffering but I'm thankful I didn't have to. 

Today I have to take this chapter, close the book, and put it on the shelf. It's over and life goes on. This sicko goes on and  this will only make me stronger! I have to believe that.

God Bless!


Thursday, August 13, 2015

It's just a Mis-understanding

Being chronically ill is no easy task and even harder for the person living with it. You spend half your time trying to help people understand but when it comes right down to it no matter how much you try to put it into words it never comes out right. I personally believe it is very easy for people to take my words in but I also know they are unable to process them in the way I want the to. If you think about it what is the right way to explain something that is unexplainable? There are never any amount of words to describe the life I lead. Many times you might explain but then the same person you explained something to a few months ago acts like it all magically disappeared. It doesn't. In turn you must try to explain again and hope that maybe this is the time it will sink in for them but it usually doesn't. Being ill for years is like that. It is so very frustrating. There are times I take it personal and get mad and even angry but then I pull myself around and do the self talk thing and remember that it isn't their fault. I try to understand the best I can by putting myself in their shoes I only wish they could at least try the same for me. I've learned that's not how it's ever going to work. I hear and have heard so many things that I must process and try my best to educate people on when it comes to chronic illness. I know I must sound like a broken record at times with my blog but I have to be honest, even though I write it to help others understand I write it more for myself, it's my therapist on paper. There are many times I write and I learn myself. 
Here we go again with another list of things I hear but in all reality I don't want or need to hear:

Work through the pain. Ummm no. I was at the pool the other day and we were doing  some exercises and the one we were doing hurt. Two of us said,"This hurts," and the instructor said, "Work through the pain. When you have arthritis you have to push through the pain." I immediately thought To myself no you don't. To clarify, yes you do if you have osteoarthritis but if you have inflammatory arthritis you are dealing with a totally different type of arthritis. You see, when you have inflammatory arthritis doing an exercise that hurts when you are doing it sets your body off into a flare. Osteoarthritis is arthritis of a joint. Inflammatory arthritis is a whole body system arthritis. If you do something that hurts, like your knee, by evening or the next day not only does your knee get angry but many other joints do the same thing. Inflammatory arthritis affects the whole body not just the knee. Osteoarthritis is caused by age or over use of a joint while inflammatory arthritis is caused by your body attacking itself hence the autoimmune disease. We all get osteoarthritis. Inflammatory arthritis is caused by antibodies in your blood that attack your body because they think the good that goes on in your body shouldn't be there and it attacks that part of you body thinking it is an invader. It's is a simple but very complex process. I always say my body hates me. Simple but true.

Get more sleep. I hear this all the time. If it was only that easy. It's hard to sleep when you are in pain. Think of the worst pain you have ever had in your life. Do you remember trying to get comfortable to make that pain go away? Well for us sickos we might get in a comfortable position and fall asleep but an hour later we are awaken with stabbing pain in a joint. Being awaken like that makes it very hard to number one get in another position that's comfortable and number two to fall back asleep because you are wide awake from trying to find that new comfortable position. Try that over and over all night long. No wonder we wake up feeling like we never slept.

Eat better. I try! It helps but it sure isn't a cure. With all the fresh fruits and veg right now it's easy. I know I don't swell quite as bad when I eat well but to say it cures is a big misconception. When it comes to foods we all react differently and we all must find what works for us. Plus I still want to live. I love food and enjoy cooking. Drinking alcohol is another issue when you go out. You are not suppose to drink on these drugs so when you go out you get to sit there and watch everyone else get crazy while you are straight trying to act like you are having as much fun as everyone else. It's easier staying home believe me. The real world doesn't understand this at all. Plus people are exhausting. Sorry if that's a little truthful but it is what it is. Socializing is tiring for a chronically ill person. You go out, you socialize, but at the same time your body is talking to you at the same time other people are talking to you. No wonder it is so exhausting. You always are the first one to leave a party or gathering. When you are done you are done. My brain shuts off and I just have to leave. It is what it is.

You shouldn't take those nasty drugs. Believe me we wish we didn't have to. I fought this for so long after I stopped my drugs a few years back. I fought with myself about going back on the drugs. I didn't want to but I knew it was going to happen. When I finally made the appointment to go back to my Rheumetologist the first thing my new doc asked me when I told him I had stopped the drugs was, "Hows that working for you?" I knew right then and there I was in that room for a reason, to go back on treatment. I haven't regretted even though it is still a struggle. We all hate to admit we need a drug. I was talking with my son about this. He is in his last year of pharmacy school and he made the point about something else we were talking about and said  something to the fact of do you want to get better? Take the drug. If not don't take it and continue to suffer. It helped me realize drugs are here for a reason, to help us, not to make us feel weak. I think that's what happens to us we feel week and out of control when we need help from drugs when in reality we need to turn it around and be okay with it. It's all a part of the process. Drugs are created for a reason.

Don't think about your pain. I've read how you should do something to help you forget about your pain. Find a hobby and the pain magically goes away. False! Don't get me wrong I believe in mind over matter and believe it helps but it surely isn't a cure. I also believe all of our therapies combined help us. Only we know what works for us. Each chronic illness if different and each person is different. What works for you might not work for me. It's up to me to figure that out my treatment and no one else. Unsolicited advice is not needed. If I ask fine if I don't keep your month shut because you have no idea what it is like to live in this hell. Thank you very much.

You are sick therefore you are dumb. I personally believe chronically ill people are some of the smartest people I know. We have a heightened sense of awareness. Our radar is on overload. We see, we hear, and we process everything way more than most people. Illness makes you aware. I believe since we are so use to listening to our bodies 24/7 it enhances our ability to listen to everything going on around us. Maybe this isn't true for everyone but I know it is true for me. I miss nothing which can be good and bad. I know how to read hidden messages and I listen real close to what everyone says. I hate it at times but at other times I think it's a gift.

It's never easy, any of it. Today I realized I have skipped my DMARD med for a few days. I'm guessing maybe 4-5 more or less. I decided to keep my pills in a weekly divider so all I would have to do is open the top and there would be all my pills waiting for me for the day. Problem is sometimes I get confused. I remember putting the pills in the container and I remember thinking okay they are all in there only to realize this morning I forget this one. The important one the one that helps slow the autoimmune disease. The problem is I have two pills the same color and my brain thought they were all in there. Nope. I've been wondering why my inflammation has increased this past week and now I know. The decision has been made- No more weekly containers! When I use my pill bottles I can seperate them as I take them and keep better track of the ones I have taken and which ones I haven't. Not a big deal for most but huge for me. For most people meds are a nuisance for me they are stressful but necessary. Trying to keep everything straight gets old. Monthly blood tests, doctors appointments every other month, keeping meds refilled and taking them at the right times, getting enough rest, getting enough exercise and not over doing it, eating right, taking care of myself, keeping the house clean, grocery shopping, keeping in touch with the ones I love, the list could go on. I'm exhausted just writing this. It's not the same when you are ill to just pop out of bed and do all theses things without a thought. For us it's a daily struggle. I'm not sure if any of this helps people understand more but it sure helped me unload. Thanks for listening!

God Bless!


Friday, August 7, 2015

Another Appointment in the Books

Yesterday I saw my new Rheumatologist for the third time in twelve weeks. The appointment went well. I really like him a lot! You have no idea how good it feels to write that. In the past when I have Rheumetologist appointments I stress the whole week before and when I get there my blood pressure is elevated. This time I didn't stress much except trying to remember all the symptoms I needed to talk to him about so I was well prepared and didn't waste his precious time. My blood pressure was low so I was very happy about that too. What I really like about him is his easy going manner. He is direct and to the point which is a quality I love in anyone I meet. I have learned more about all that is going on with me in the last 12 weeks than I have learned in the past ten years. I have been having issues with my fingers and toes prickly tingly, being very sensitive to anything, and going from ice cold to on fire in a minutes time. I mentioned this to him because I thought it could be a side effect to the new medication he put me on four weeks ago, more on this later. Without hesitation he said, You have Raynauds Syndrome." He explained how the nerves in your fingers and toes have muscles wrapped around them and how your brain messages are messed up as they send messages to your fingers when you go from temperature to temperature hence the symptoms. I have never been aware of these issues because like I told him when you are ill there is alway something going on so you learn to either ignore or blow off symptoms. But since this has become more of an issue I couldn't blow it off any longer. He told me to read up on Raynauds and try to become aware of when the symptoms appear such as going from one room to another or if you are shopping and go in the frozen foods area and have issues. My jaw may have fell open because I always have issues in that area of the store and it isn't just with my fingers but a whole body issue. I rarely go anywhere without a sweater even when it is ninety degrees outside. Air condoning as much as I love it and can't live without it causes me issues from the cold. It's nice to put a name to that issue!

I started a new medication four weeks ago and am blown away by the results I am having. It is call Arava and is a DMARD which stands for disease modifying antirheumtic drug. They basically suppress your immune system from attacking your body. In autoimmune diseases the immune system attacks the body and these types of drugs suppress or slow down the immune system which in turn, if you find the one that works for you, calms down the disease process. I have tried three DMARD's and I am hopeful this is the one I can call mine. I haven't had any of the side effects Dr. Beherendsen warned me of and I am feeling better. This surly doesn't mean I'm cured. I am still having issues don't get me wrong but better none the less. My fatigue has improved significantly and that improvement alone is huge. Very huge! If you have ever experienced extreme fatigue, unexplainable fatigue, you will understand how huge this improvement really is. When you are less fatigued you are able to live better and do more. I am still having joint pain and inflammation. My elbow, fingers especially my pinky joints, and my right knee being the main areas at this time or as I like to say the pain dejour this week is....... My right knee, elbow, and fingers. Next weeks dejour maybe totally different so you learn to go with the flow, one day at a time!  When he examined my joints he felt the inflammation and explained it to me perfectly. My right knee has been extremely painful at night but my right pinky is a 24/7 issue and has been for some time now. He said because of the arthritis when you have a joint that isn't in motion, such as when you sleep, the fluid in there which is usually like jello was before you put it in the frig turns into jello after it has been put in the frig. The joint pain is caused because the fluid is gelling which in turn causes the pain. This is the reason the problem for me is better as I continue to move and hence the severe nighttime pain. This also happens to me if I sit or any period of time. He said we could inject my knee to ease the pain but we decided to wait until our next appointment in four weeks. He explained since I have improved on this medication it is only going to get better so hopefully these joint issues continue to improve and if not I'll get shot up. I'm no stranger to that either so if it need be its fine with me. He said usually by three months there is much more improvement with this medication and by six months more improvement and by nine months I should be a lot better. According to my math that's eight more months but what's eight months compared to ten years? A small drop in the bucket. I can't even imagine my life being handed back to me after 10 years. I've felt like shit for so long it's hard to imagine what life might be like without pain and suffering. Is this really happening? Could this be true? I can hardly wrap my brain around the thought.  I thanked him and told him, "You mean to tell me I could have started this drug ten years ago and been better all this time?" He said, "Yes. This drug came out in 2000." I sighed and decided right then and there I had to let it go and look forward and not backward when it came to all of this and to be happy Dr. Berendsen has been sent here to practice. That story is crazy too because he was hired to replace my other Rheumatologist and the timing of me setting up an appointment with him was bizarre. Then the day after I saw him in the Metro health system I find out he is switching to the Spectrum Health system where all my doctors are practicing through. This was no coincidence but a  blessing I am grateful for. A God thing.  I hope and believe this is the beginning to a final acceptance of this disease process. Ok maybe not a total acceptance but a deeper understanding of how and why things happen when they do. All of this is so complex. Having all of my issues explained to me in terms that it has never has been explained to me before has helped me so much. Stay tuned for a hopeful remission!

God Bless!