Monday, December 31, 2012

I Finally Made It

Well, one more goal met. I remember when I first became sick and tried to deal with not only the physical symptoms of being sick but the also the emotional symptoms/aspects. For a long time, even as sick as I was, I tried to fight it and keep up with the world. I thought I still had to be my old self. The self that could do everything. I continued to do as much as I could no matter how sick I was. I pushed myself so hard that looking back I wonder if it made me even sicker. If you know me at all I am stubborn as hell and I am a fighter. I don't give in very easily and I am pretty good at arguing when it comes to something I believe in. Although when I disagree with someone it can be easy for me to walk away or stay away from people who think their way is the right way or the only way. There are the times I wonder if my bullheaded demeanor made me even sicker. I do believe in the mind over matter when it comes to anything, especially illness. If I didn't believe it then I surely do not believe I would be here writing in my very own blog.

This past September marks my sixth year of dealing with my Inflammatory Arthritis and the neurological issues that are going on that seem to not have an answer. It is very frustrating to know and have the doctors tell you something is wrong but we just don't know what it is. You want to talk about being a strong person? Living each day feeling sick or different than the normal world and having no answer is its own hell. You know you are ill, they know you are ill, but their is no answer. Do you think you could do it? Live without an answer? It isn't easy and if you are not a strong person it could actually eat you alive or drive you into a mental hospital. I am fortunate to live with a man who understands. He sees my illness and is very supportive. He reminds me of past doctors appointments and what the doctors have said, especially on my bad days. He knows I am sick. The rest of the world doesn't. He lives it with me as the rest of the world only sees beautiful makeup and hair and a person dressed who looks just like them. Oh but on the inside I am much different. I am fighting a monster everyday, something most will never understand but that is okay because we do understand, we live it.

I met a friend on facebook who takes the natural approach to treating her arthritis. She has posted many good informational posts from her blog and I have learned a lot from her. Most importantly I have learned about stress and toxic people. You know and learn who your toxic people when you are ill, but then again I have always known. The ones who suck the life out of you always expecting you to do everything and bend for them but they are never willing to bend for you. They are always right and things always have to be their way. They know how you should live your life and are not afraid to tell you how. They think they can rule you and your family and are self centered and you are suppose to do what they say or else. Of all I have learned from my friends site the most important is that sometimes you must delete these people out of your life. The biggest question for me is how? How do you do this when some of these people are your so called family? I struggled with this especially for the first year. I stopped going to family events because every time I would go I would be sick the next day or depressed for a week after trying to understand how your so called family can be so rude. A few years back when something happened with this so called family the frosting was put on the cake for the last time. I  made the decision to cut ties except for when I absolutely had to see them. The first time year was hard but as time has gone on it had become so much easier. I don't feel bad or sad I feel refreshed and proud. Proud that I can finally make the choices for myself that are not only good for my health but for my soul and my emotional health. I watch people do things with others only to complain about it afterwards and I wonder why do we do it to ourselves? I am not willing to sacrifice anymore of my life to the energy sucking selfish people of the world. I feel I have done it long enough and it is time to focus on what is good in my life, the good people in my life, and what is right for me. I am grateful I have finally made it here it feel really good!

God Bless!


Sunday, December 23, 2012

Keeping An Open Mind

I am trying to keep an open mind about my sleep issue. I am not getting too worked up with the fact that I am getting virtually no sleep and am feeling awful. I am not that worked up about it. Truthfully I am just trying to keep my body working in sync as it is so deprived of sleep that nothing is working together. Yesterday my neck was in so much pain I could hardly function. I had a horrific headache that I decided when I got up I was not going to give into. I did many things around the house and fought through the pain. If you have ever been sleep deprived you might be able to understand where I am at with all of this. You also might understand why I came to the decision to take a Xanax at bed last night. Ya, ya, ya I know my doctor is totally against it but my doctor isn't living my life of sleep deprivation. I took a half of pill around 10:30 and after I read for a while I went to bed. I laid there for a short time and I was out. I woke up once in the night to turn my stiffened body over and fell right back to sleep. My neck did not wake me up at all last night, which is funny since the past few months my neck at night has be giving me hell to say the least. I woke up and turned in the morning and knew that Rich was up but I fell right back asleep. I woke at 10:20 and forced myself to look at the clock. Truthfully I could have slept all day. I have over two months of no sleep to catch up on, but I forced myself to get up. I got out of bed and much to my surprise my neck was better. Hummm, that is another surprise because since I have stopped the Xanax, per my doc, my neck has been worse in the daytime too. I have been suffering to say the least.

I am still baffled as to why I cannot take this drug at bed. I have absolutely no intentions of ever taking it during the day. I have absolutely no intentions of becoming addicted to it like all these docs think I will. I take it to sleep, plain and simple. It works for me. All the other drugs I have tried have not helped me one bit and have only made me worse when I took them. I am at a rock and hard place. I don't know what to do. It is clear my new doc is not going to work with me and believes in the one size fits all approach. Well, not always and especially not with me. I am getting more and more frustrated. I am pissed at hell that I am diagnosed with anxiety over the phone the other day by a doctor who hasn't even seen me and then told to take Zoloft. Seriously? When Rich came home that night and I told him that I had anxiety and he looked at me with a funny look on his face, "You with anxiety, I don't think so." Of course the first thing I said was, "Thank you very much." I do not have anxiety. I can't fall asleep so that means I have anxiety now? I am at my wits end and I have come to the conclusion that my anxiety comes from people, sometimes, many times  docs, who do not get me. There are very few who do and very few who ever will. I am working with a physical therapist now for my neck and he is figuring me out real fast. He is already seeing that I am different and understanding it. I am grateful to my few docs who get me and are willing to work with me and do what is best for me, many aren't.

I am happy today. I slept last night. I feel like a whole different person today and for that I am grateful as ever. The worst part is I am at a place where I am wondering how I am going to get these drugs to help me sleep. I am worried and yes anxious about this one issue. Rich is beside himself as he watches what this no sleep is doing to me. He continues to tell me he is going to take the matter into his own hands. I have told him no and he respects what I want, but now I wonder. Do I let him help me here since I am not being listened to? Do I quit the drugs and never sleep again? Believe me I have not felt this good in a few months and it makes me miss my sleep even more. No sleep is a hellashish kind of torture. My memory is gone. I can't concentrate. I can't socialize. I don't want to go anywhere. I am exhausted to the core, but today is different and I will enjoy it! I will look forward to an answer to this issue because I know there is one somewhere in the near future.

God Bless!


Friday, December 21, 2012

Insomnia Sminsomnia Part 2

Yesterday was part 1 of installment of Insomnia Sminsomnia today is part 2. Last night I decided I would take another ambien in the hopes of a good nights sleep. I laid in bed with chest pain and thought to myself why did I take this? Seriously? The past three times I took it I hated it but I am so tired I was hoping I would get a better result this time but nope. I thought to myself as I laid there this is worse than laying here waiting to fall asleep for a few hours without any drug in my system. I have come to realize I hate these meds that are suppose to help the normal population sleep better, they don't help me at all, only make it worse. I don't know if it is the combination of all the other stuff I take mixing and working against one another all I know is I don't like it. I especially hate feeling like the walking dead the day after, today. I am a zombie. I feel like I didn't sleep all night and I feel sad. This is not me at all. I am frustrated and angry to some degree, but I will save all those details as I have blurted them all out in past blogs. I know it will get better!

When I woke up this morning feeling like hell I decided I would call my doc back and see if she had any other ideas on how to get me to sleep. I have exhausted every pill they have available that helps with sleep, they just don't work for me for some reason. I always think it is because of my thyroid because almost every drug tells you not to take it or be careful if you have thyroid disease. All I know is if I take a drug it always affects me differently than it is suppose to affect everyone else. I know it sounds crazy, but true. Back to the doc phone call. This morning my so called insomnia diagnosis has been changed to anxiety and she wants me to try zoloft. Seriously? I was in shock when this new diagnosis came to the table, shock has turned into more frustration. First off I looked up anxiety and the only symptom I have is I have a hard time falling asleep. Secondly, why would I take a drug at bedtime that has a side effect of causing you not to sleep? Are you kidding me? I am starting to lose my faith in the medical system. Take this, take that, and I am so tired of it all. It is a frustrating cycle of events, one after another. I am tired of dealing with all of it. I just want to sleep, that's all. Now that I have done my research on this drug I decided I am going to steer clear of it for now, at least until I talk to Dr Key. I am going to research more ways to use Yoga and meditation to help me calm my mind before I get into bed. I do not need a drug! I do not need a drug! I am going to continue to tell my brain I do not need a drug and eventually I think it will get the message and if not then I will deal with it at that time.

Hopefully installment 3 of insomnia siminsomnis/(anxiety?) does not turn into another diagnosis before I get this all worked out and I will!

God Bless!


Thursday, December 20, 2012

Insomnia Sminsomnia

Insomnia? Are you kidding me? Yup, my latest diagnosis. Really? I cannot wrap my head around this one at all. I really can't. I have been struggling with it for a few months now since the Xanax pull trying to figure it out. I can't agree that is my diagnosis. What do you think of when you hear the word insomnia? I think of someone staring at the ceiling not sleeping at all, not someone who has a hard time falling asleep but once there is out.

According to my mother as soon as she gave birth to me I was not a sleeper at all. I came out eyes wide open. Just like me, I never miss a thing, still. Okay, maybe the old Dianne never missed a thing, this new one misses a lot more than she should. Insomnia? I don't think so. As I grew my mother tells me I would crawl out of my crib and crawl into a corner and cry. It got so bad they had to put a net over the crib to keep me in there. I'm pretty sure that would be child abuse now a days but back then we use to ride in the back seat of the car up against the window on the ledge, so caging your child must have been common practice. But really if you think about it what were they suppose to do to make me sleep? Insomnia? humm, at age two?I grew into my own big girl bed and had issues there too. I had the creepiest room in the house. I swear it was haunted and I will leave it at that. I didn't sleep much. I mostly laid there with my eyes open worrying about school or the boogie man under my bed always pulling the covers over my head to protect me. I grew up more and we moved. I was in 3rd grade and I couldn't wait for that summer move to get out of that creepy bedroom that I never slept in. Ahhh, the move came and I had hope of sleep. I was much more relaxed in my new bedroom that didn't have any boogie men under the bed. You would think I could sleep. Nope. The older I got I begged for a small tv one Christmas so I had something to help get me sleepy. I finally got one in the later years and I was able to fall asleep better. My problem is not the sleep, not at all, my problem is the falling asleep part. This has followed me into adulthood. Insomnia? I really don't thinks so since it has been with me since birth. I believe my brain works differently. That is why I was so happy when I found the Xanax. It did the job perfectly for me. I was finally, after 46 years,  able to fall asleep. It was my answer until my new doctor said no more. I miss it so. I am hardly able to function lately. My whole personality has changed. I am exhausted to say the least. I have another sleeping pill to take which helps but I hate it because it affects my memory and then I can't sleep the next two nights after I take it. Insomnia? Yes! I feel like I do have it now because I am up all night long. This is sheer torture. I don't remember it being this much torture before the Xanax.

Yes, I know what you are thinking, get a sleep test. Do you want to hear about that nightmare? I had one about ten years ago. It was horrible from the first time I met the sleep doc. He told me I needed to lose 100 lbs. Seriously? Okay I will be skin and bone and never eat asshole. I was so rude to him and he knew I was pissed. I told him that I wouldn't sleep at the test because I don't fall asleep and when I travel I never sleep so I knew this test was a bad idea. "Oh don't worry our tech's know how to get you to sleep." I went. I didn't sleep. At four thirty am the tech came in and asked if I wanted to leave because there wasn't enough time to do the test. I said, "Yes, I told the doc I wasn't going to sleep but apparently he knows my body better than I do". Man, I was pissed to say the least. I get a call from his nurse the next day that he wants me to go back. I asked her if she was kidding me. Then, she said Mr jerkface wanted to meet with me again in the office and I told her I had to think about it. In the meantime my primary doc called and asked me to go back. I did. He apologized, which after the lose weight comment, his apology meant nothing. I did go back but this time he gave me two ambien pills which knocked me out. I felt like I was on some kind of high I just wanted to come out of. I slept to some degree but I remember feeling awake the whole night. The test came back showing little to no sleep problem but he wanted to start me on some sort of seizure meds at bedtime so I slept deeper. I said, "Are you kidding me?" I was so drugged up no wonder I couldn't sleep, geeze. I went home and researched the medication and decided I was having no part of that. What a waste of my time and money not to mention the insurance money. The WORST experience I have ever had in my life medically. My Neuro mentioned a sleep study the last time I saw him. I didn't say anything all the while thinking in my head there is no way in hell I am doing that again. He assured me you can even do it at home now. We will see. For now the answer is no but who knows what the future brings.

Sleep is so important. I have gained over ten pounds since the drop of the Xanax, not changing my diet at all. It must be true what they say, No sleep and you gain weight. I never believed that but now I do, especially since the ten came on over night, so it seemed. I am frustrated, exhausted, and feel like I am loosing a part of myself. I hate to continue on like this. I am looking forward to talking with my Rheumatologist in a month to see what she has to say about this. I trust her judgement totally as she has been instrumental in relieving my symptoms. I don't know what I would do without her. As for now I press on. Another issue. Insomnia? No? Yes? Maybe? I hope not! All I want is a good night sleep is that too much to ask for? I am staying positive and hanging onto the hope that seeing Dr Key the matter will get resolved somehow.

God Bless!


Saturday, December 15, 2012

Am I Dying Or Is It The Drugs

Man the past month has been brutal. I don't even know where to begin, that's how bad it has been. I have developed some strange, either reaction or side effects, from my Methotrexate injection. I have been wracking my brain trying to figure out. You do that you know, try to figure out every little detail as to why you are suffering more than the "usual" suffering. Is it that my body is becoming ill from this drug? After all it has been almost six years since I have been on this poison, five of them on the injection form. Yes, a shot every Wednesday at some point during the day. When Wednesday arrives I feel myself delaying the shots even more as the day continues because I know what is going to happen. I use to look forward to them because they offered me so much relief, now it seems they are adding to my problems. The results from this drug have been good in the past with the exception of a headache the day of and the run down tired feeling that goes away within twenty four hours, at least until a month or so ago when things began to change. The symptoms are becoming very scary. I am weak, fatigued beyond my "normal" weak and fatigue, hot then cold, headaches, achy that is different, but worst of all is the night time symptoms when I am trying to sleep. I can't explain it. I get some sort of a rush in my chest that wakes me up almost like I have stopped breathing and my brain is nudging me to wake up and get some air. I get hot and sweaty and it scares the hell out of me. I mean really, if I am going to die in my sleep then get it over with already and stop waking me up. Okay, settle down that was my attempt at a little bit of humor, so relax. This weird sensation follows me in the daytime too for a few days after the shots so I am thinking it can't be a sleep apnea thing because it wouldn't happen during the day. All I know it I don't like it!

I have been trying to figure this out, going over it and over it in my head. The only thing, and I think the biggest thing, is that I am not sleeping. The Xanax pull has cut at least four to five hours of good solid sleep out of my regularly scheduled sleeping pattern and my body is in shock. We all know how important sleep is but when you are ill it is ten time more important and when you are losing that many hours it is bound to affect your health. This week I decided I would decrease the dosage of the shot down a bit to see if that helped. It has to some degree but I am still not right at all. It seems I am not as sick as the last few weeks. Last week the symptoms lasted five days, this week they are still here only a bit better. I called my Rhematologist who said I need to decrease even more to half the dose, see if that helps, and if not call back. She doesn't want me to quit the medication, as I threatened, because I have had such good results with it up until this point.Yes, that is how bad these symptoms are, I was going to get off it. I figure I can deal with more pain and stiffness better than whatever "this" is. I feel much better knowing she has all the details. I am to call if this doesn't help and if it does we will add back a higher does slowly if needed. I press on for now and see what the future has to hold. I hope when I drop the dose next Wednesday I start to feel better because I cannot even imagine celebrating any holiday like this. I just want to crawl in a hole, BUT you know me that is not going to happen! We have a party with some friends tonight and I am not in the mood or in any way feeling physically up to a to party, BUT I  will go, I hope! I will have fun! Mind over matter! Keeping the thought in my head that it will all go good and I will be okay. Also, praying tomorrow isn't worse because I went out. You know how with chronic illness there is a pay off. Do too much pay the price and when you are already feeling lousy the pay off is even worse. Inside I really do feel like I am dying. It is weird I have never felt this awful, BUT it will get better, it has to! Press on my friends as will I!

God Bless!


Wednesday, December 12, 2012

Home Sweet Home Or Bath Sweet Bath!

Well, there it is. All I want for Christmas. I'm not talking about a trip to somewhere that will only last a week or a place that is somewhere that will only become a memory, but a place, a haven where I can go to rest my aching body when it is turning against me. A place to loosen the painful muscles. A place to relax and calm my mind. A place like above to soul search and find that inner peace that is so easily distracted by all that I should be doing and quite frankly on many days am unable to do. We all need to have a place like this to let it all go and forget about all that the world is trying to pull from us. A place to just be. A place to quit the mind and the soul.

I have a place, well, a bathtub. It is without a doubt, with the exception of Rich's arms, my favorite place to be in the world. To be truthful the bath is the place I go to before I can go into Rich's arms so I guess it is really my go to place. It is crazy but when I first saw this picture it actually took my breath away. You see, when you live in pain the heat and the water become your best friend. It is sad that whatever you do and wherever you go that most of the time all you can envision is your hot, steamy bathtub. It's the sad truth and you know what? I don't even care that I have to admit that anymore.There are times I sit waiting for the water to fill up and I thank the Lord for our bathtub. For me the bath is like whiskey to the alcoholic or chocolate to the chocoholic. I am being very serious here.

Rich is my number one cheerleader when it comes to my bath addiction. His famous last words in the evening are, "You go take your bath and I will finish up here," which may be doing dishes or whatever I am in the middle of at any given time. The times he can read my face and know that it is time to go soak to relax all the muscles that are overworked trying to keep my joints moving. Of course some days are worse than others and it is amazing to me how he knows by just looking at me. I am not a complainer, unless it is a really bad day, I would never let him know, but he does. He worries way to much and has enough stress with his job so I try to fake it. Well, you can't fake it with the person who can read you like a book. So I hear, "Go take your bath," almost every single night.

We are talking about moving into a house with less steps, not only because steps can be hard to get up, but they can also be a hazard to someone who has issues walking down them. Falling and getting hurt is a constant when you are ill, so we are seriously looking for a place that is ground level and has no steps or very few. Our house now is on a hill with nothing but steps, steps, steps. I hate it but I do not let Rich know how much, but he knows. The funny part is that the two things Rich is concerned with when we either find a house or build one is number one, the bathtub, and number two, no steps. It saddens me that all he worries about is me. He isn't worried about having the big man garage or the things other men worry about, no he is worried about the bath and the steps. Living with me has changed his whole being. It saddens me so.
The past month or so I have been thinking about all the scrap booking stuff I have in the spare bedroom in the basement  and I thought it would be so nice to have all that stuff on the main floor so I could actually do it. I waited and waited to tell Rich my idea because I didn't want to add more onto his plate but the other day I did bring it up, finally. He was ready to move it the second I told him what I was thinking. He is always so willing to make life easier for me. I told him not now and to wait until the guys were here and they could all do it together. It seems he gets so wrapped up and worried about taking care of me he forgets about himself. It is hard for me, very hard. Geeze, here I go getting off track again, I never know where this blog is going to lead me.

Back to the bath. Truthfully I don't care what kind of bath we get as long as we have one available. It makes no difference to me if it has jets, if it is round, if it is large, or if it is small, as long as it has hot steamy water and I can cover my body I am good! I think it is time to end this blog because I hear something. I can hear the words of Rich telling me, "Just go take your bath," so you know what? I think that is just what I am going to do.

God Bless!


Saturday, December 8, 2012

Can You Hear That?

Listen real close, can you hear that? No, not that car that just drove past with their music blasting. No, not your children screaming, maybe fighting, or just playing in the other room. No, not the dog barking. Listen again, hear it? Boink, boink, boink. Yup that is me banging my head up against the wall for at least the tenth time in the past two years. I don't know why I cannot learn my lesson the first time something doesn't work out for me. I still have to try the same thing over and over and then realize and ask myself why? WHY? I guess I am a slow learner or just a dope.

What am I talking about? Getting this hair brain idea that I can stop taking these drugs I am on. Every single time I try to do it I am slammed down so hard that I can hardly function. I tried once again, as I did a few months ago, to cut down on the prednisone/medro and now I am paying dearly for it. I can hardly function. I am weak, tried beyond anything anyone could understand, and my pain and stiffness have been worse. When I feel like this it sends me into some sort of isolation mode. I can hardly take care of myself and to see other people is totally exhausting and takes way to much energy, energy I don't have to expend. The tiniest drop in this med can send me into a tail spin. It not only affects me physically but emotionally. I become so exhausted that I break down very easily. It is hard to realize, and have to believe, that you are going to have to take these stupid drugs for the rest of your life just to be able to function. It is hard to get out of bed and not feel like you haven't slept and to have more morning stiffness than usual. But I have to come to the realization that these are all the signs that I cannot drop the dose of this drug and more than likely will need them for the rest of my life. That is a harder pill to swallow than the actual pill(s).

My biggest issue in trying to cut out medications is I start to listen to other people. No drugs seems to work for some people with autoimmunes, I am very happy for them don't get me wrong, but when I start to believe that maybe if I cut out this drug out I can cut out another, for me it isn't a good idea. I want to really bad in my heart and soul to get off these drugs but every time I do there is a payoff. The payoff isn't worth the idea of being drug free so I go back on the drug until I forget how bad it was to try to wean off it and then go through the same cycle once again only to realize I can't do it. If you know me, can't isn't a word in my vocabulary and I think that is why I try to get off these drugs over and over again. The worst part is that when I decide I am going to get back on the regular dose I was on before the taper it takes a week or two to get back to the normal, my normal, that I was before the initial dosage drop that I always regret. Every time this happens I tell Rich I am not going to do that again but then I turn around and do it again. You think he would slap me upside the head and say knock it off, but he never does. He always understands. he knows the mental hell this is as well as the physical hell it is. I must have been worse then ever to warrant a dozen roses. You have no idea how those roses make me realize how hard this disease is on him and not just me, but that would be a whole other blog entry. I don't think I would be sane without his love, support, ears, and shoulder to cry on. He always knows what to say to make it better. I am thankful or that!

Today: back on drugs. No more tapering or cutting a drug out, no more banging my head up against the wall. Boink. I am hoping that the drugs get me back to my "normal" state before Christmas gets here. If not, one day at a time as usual. The next time you might hear that boink could you please leave me a message and remind about this blog entry? I really would appreciate it!

God Bless!


Wednesday, December 5, 2012

Yoga: My Big Step Out In A Normal World That Doesn't Understand

Today I write for a specific reason but I am sure before I am done I will touch on more than one issue. I write a lot about not fitting into the real world. I write how I don't feel as if I fit in anywhere because no one could really understand what I am going through or living with. In my real life, outside of my blog, I am not as happy to devulge as much information to others as I do though my blog. It is just too painful for me to actually talk about and to see the looks of healthy people trying to understand when they never could. The exact reason why I usually say I am either ok, fine, or good when someone asks me how I am.

Last night I had a huge awakening and almost a ah-hah moment, not that I don't have a lot of those on a regular basis, but this one was a little different. You already know I have been doing yoga. It has been eight weeks now with the exception of missing one because of a doctors appointment that took longer than expected. Yesterday was a rough day for me. My sleep has been horrible and yesterday I was feeling the affects of not sleeping. It is almost like a form of self torture when you have trouble sleeping night after night. I never knew what this felt like before and it sure isn't fun. I have sleeping pills but I have found that they make me crazy. I took them a a few times and I do not like them. I went to the store the other day and felt like a zombie walking around and around in circles on them so I have decided no more of those unless I am desperate. Funny how I never had this on the xanax. I slept well and woke up pretty refreshed. Now I am given sleeping pills which, for me, have much worse side effects than the xanax and I don't sleep well on them at all. I still can't figure this one out and am anxious to talk to my Rheumatologist about it. On the way to yoga last night and after the way I felt all the past few days along with all the negative self talk I felt from lack of sleep I almost turned the car around and went back home. I was in tears on the way. I literally pulled into a church parking lot and made a deal with myself. if my yoga mat was not in the back of the trailblazer I was going to go home and not go, if it was there I was going. It is funny because I thought it was in the house and when I opened up the hatch, ta-dah there it was. "Crap!" I said to myself, "You are going and knock this crap off and go. " Off I went to yoga class.

Getting back to the real world and the ah-hah moment. The first five weeks of yoga I looked forward to going. It was the very, very beginner class, the basics. The instructor was/is great. It was a comfortable setting because all the people in the class were just like me as far a never having had any yoga knowledge. The next class I signed up for after the very very beginner was the beginner class. I was nervous yet excited about going. I had finished the first five weeks and felt okay about yoga. My neck by this point was still not doing better but the instructor told me it could take up to a year. A year? Ughhhhh! Believe me with chronic illness you learn patience in many different ways so why did I expect yoga to be any different? Signing up for the second class was huge step for me. This class would have people in it who knew much more about yoga than I had learned in five short weeks. I signed up anyways! The first week went okay. You see, this class had been together for a while and there were only a few new people, one lady who was in my class, and myself that I know of. The hardest part for me in this class is that I am different. There was a group of women three or four of them who were yucking it up a lot of the time time. I left wondering if this was the environment of the class and wondering why I am doing this but I also thought to myself just keep going this is good for you! The second week the women were worse. Saying how they filled out a form at the end of the last session and one of them put on their form how they wanted more fun people in the class. Last night, the third week, one of their friends moved over by them and one said, "Oh ya come over here to the fun side of the room." Of course I was on the side of the room that apparently has no idea how to have fun. Seriously? If you know me at all I have a fuse. It doesn't get lit very often but when it does everyone better watch out. My fuse was half way lit from the few weeks before and I had to control myself to not let it lose because if I would have it wouldn't have been pretty. I bit my tongue and sat there in utter amazement that someone was so rude to say things like that, as was the rest of the side I was on. Odd to me because these women work in a profession that you would think they wouldn't act like that in public. Enough said.

The story above, for me at least, is one of those that I am talking about when I say the normal or real world doesn't understand. You see, for me the yoga is not for fun. The yoga for me is a HUGE step not just an hour a week I go somewhere so I can hang with my girls, belittle others, and brag to others that I am in a yoga class. To put it mildly and what I thought in my head the first week I met this class and wanted then and still want to shout out to them: "THIS YOGA CLASS IS SERIOUS SHIT FOR ME SO SHUT UP WOULD YOU?" Yes, this is my non-filtered head the things people can't hear me say but many times what I think. Me at my finest when I get pissed. This class pisses me off, not the class but these women.
Then the ah-hah moment. On the way home last night I pulled back and thought to myself. These woman have no idea what I live with. They see a blonde, freshly colored I might add :), who has a nice yoga outfit, nice makeup, does all the poses, and has come to class each week just like they have. They see a person who is no different then they are. Would I ever let them know about my struggles? No way! If they have no compassion for anyone else in the class why would I ever trust them with my life story? I wouldn't. You see I am the person who believes in the quote by Maya Angelou, "When a person shows you who they are the first time believe them." These woman have showed me who they are for the past three weeks and to tell you the truth I would never hang out with people like that. I never use to be like this but now my time is precious. Time for me is life. The small amount of so called "good" time for me is precious. the "good" time that allows me to go to a yoga class is a treasure for me. If I am feeling good enough to go to a yoga class then I am there for a reason, in hopes of feeling better because of it. I will not allow the normal world to cloud that out for me and I will not become angry and bitter. I will not become angry and bitter. I will not become angry and bitter. By the time I got home I was over it for the most part. I was glad I went even when I so wanted to turn that car around and stay home. I learned a lesson, self taught, last night. Just because I don't feel like doing something I still must do it and from now on I will go to yoga in a better state of mind even if the real world has no idea why I am there.

God Bless!


Tuesday, December 4, 2012

My Distorted Self Image

When I first saw this cartoon it made me laugh and yell hells ya! Reminded me of the song I'm sexy and I know it. I mean if you think about it being sexy is not just an outside thing but it really comes from deep within your soul. Am I any less sexy than I was before the illness? The other thing I thought about this picture was, that is so me, in a picture at least. Adventurous, pretty secure in myself, most of the time. I like to be alone, and taking the risk of sounding like a snob, I like myself. I am my favorite person to hang out. I am always right, which is usually the case even when people are around. I am pretty much in control when I am alone and have no one to argue with or yell at. I have no one to take care of but me. I can do whatever I want whenever I want and not have to hear anyone say 'I don't want to do that.' It isn't a bad place to be, alone with yourself, and since I spend more than half my life alone I have learned to bring out the creative person that has been hiding away for years because I was so busy trying to make everyone else happy. I like where I am at now and I'm not afraid to say that. I hope that doesn't come across as a selfish statement, just a true one. A confident statement. A I know who I am statement. To me there is nothing wrong with that. You see, when you are alone a lot you learn who you are and that isn't a bad thing at all! Plus, being ill kind of pushes you into a place where you are better off alone. It is hard to be in the world because you can never keep up. It is all good.

I colored my roots today, yes I am vain too, and as I was drying my hair after I washed the color out I thought to myself, do I have a distorted self image? I sure do feel like the woman sliding down the slide but as I look in the mirror I see a different woman. I remembered the last time I slid down the slide with Hunter and Addi at the park and the next week was horrible as my neck went out and the pain was excruciating. I surely am unable to wear the red high heels anymore, not that I ever could. I can hardly balance on two feet let alone high heels so now the fashionable red slippers take their place. Her outfit? Ya, looks sweet and sexy on her but I am pretty sure I could never find it in my size. The same words keep crossing through my mind, do I have a distorted self image? I have to believe I don't, but I still wonder as that keeps crossing through my mind. Do I have a distorted self image? Yes, there was a time I was able to do all that stuff. Slide down a slide without a payoff. Put on the heels and drive my man crazy and not fall. Wear the skimpy cloths but as I think about it I still do all those things just in a different way. A way that keeps me acting my age. A way that protects me from the evil called pain. A way that still drives my man crazy, but then he is a man, doesn't take much there. We both have relaxed more as we have aged. All in a good way. A way that helps me to realize my self image isn't so distorted after all even with all I have been through and I love that!

God Bless!


Monday, December 3, 2012


Jealousy. What does that word mean to you? I am sure we all could have a story about jealousy. A story of jealousy amongst family members. A jealousy amongst friends. A jealousy amongst coworkers. How come we are able to look at others and wish we had what they had while all along missing out on our own fortune? I have witnessed people torn apart by jealousy and it is a sad thing to endure. I myself have been affected by jealous people. I myself am not a jealous person and I never really have been. I find that when someone gets something, is promoted, has a child or grandchild, etc, that I feel a huge sense of happiness in my heart for them. I could care  less about all the stuff others get as I am able to be happy with what I have. I have no idea why I am like this. Maybe my parents instilled in me that having all the stuff of the world isn't/wasn't important or maybe it is because we never had the money to have all the stuff. I never ever remember my parents being jealous of anyone only doing good for others. I am thankful for that lesson.

What the heck does jealousy have to do with chronic illness? Truthfully I almost hate hearing that word, jealousy, more than likely because of the fact that I don't understand it. I think I may have felt a little pang of jealousy this past weekend as Rich and I did our usual Christmas shopping. We have always done this together so this year was no different. I would never be able to go out for a whole day shopping without him, and by whole day I mean 4-5 hours. We don't buy lots of stuff for our family just a few little items but now with little ones around it adds a little more time on to our shopping day. I was in Meijer looking at the toys for the kids when I about had a panic attack. A little girl was singing Christmas carols up and down the isles, another lady was standing behind me literally breathing down my neck invading my space, and all I wanted to do was run and get to the car as fast as I could. I have a terrible time at Christmas with all this Christmas cheer mostly because I don't understand why people cannot have that cheer all year long. I was waiting, more like longing, for Rich to return to me as he was at the other end of the store picking something else up. There I stood like a child waiting for my parent to save me from the chaos that surrounded me at that moment. You see when you don't get out much and with pain and fatigue all I wanted to do is run in and run out and be done! The real world for me is different than it is for most people. I feel like I am an outcast and have no place in it anymore. I live in a different world than most and it takes a lot to admit that.

Later that afternoon when we got home I was tired but very happy to be home, in my safe haven. The one place where I can rest if I need to. The place I can be myself, so to speak. The place I don't have to be someone I'm not. If I am weak or in pain I can let it out. Rich is use to it but the real world? Not so much. I'm pretty sure if I sat down in the middle of the Meijer toy isle I would have gotten some pretty awkward stares from people, from the "normal" people, who have no idea. We finished and headed home.
As soon as we had all the stuff, let me rephrase that, as soon as Rich had all the stuff in the house I said to him, "Is five o'clock too early to go take my bath?" His answer, "Of course not, go and I will take are of everything down here." I went and he did, as usual. I laid in the hot bath relaxing all the painful joints and muscles thinking to myself about the day. It doesn't happen often but when it does it does, and I began to cry. Jealous? Maybe just a little. Sad? For sure! I thought about being able to shop like I use to and getting excited about Christmas like I use to. Now it is just a major chore and a whole lot of work that exhausts me to the core. Don't get me wrong I love it when it is happening but all the preparation is absolutely exhausting for a person who is chronically ill and I never know what it is going to do to me after the fact. Jealous I can't have a "normal" Christmas. Somewhat.

I got out of the tub after my pity party and went down stairs. Rich had no idea how I was feeling until I sat on the couch and started to tell him how hard the day was for me. He is so chipper. Smiling and saying, "Oh come on that is why you have me. God knew what he was doing when he put us together." Then I really started to cry and told him I knew all that and then I asked him what would I do without him. If something ever happened to him? Yes, when you are ill you wonder about things like this. In his usual fashion he said, "Nothing is going to happen I'm not going anywhere." For some reason he thinks he is immune to this death thing because God knows I need him to take care of me. He comes over and kneels down and puts his arms around me and reminds me of his love, but most of all about his understanding, he gets illness better than anyone because he lives with with me it all the time. He makes my jealousy go away. The jealousy of having no medical issues to deal with, the not being able to shop without thinking about the pay off. He reminds me how truly blessed I am. I feel better and return to my un-jealous self real fast!

God Bless!