Sunday, July 29, 2012

How Do I Love Thee? Let Me Count The Ways

I am sure when you read the title of this entry your first thought was here we go again she is going to go on and on about her wonderful husband, you may have even rolled your eyes as you read it, but no you are wrong. This is about my new obsession/love called Pinterest.

Over the past few months many people told me to get on Pinterest you will love it. All I could think was that it would just be another thing I had to check everyday. The internet has taken over a lot of my time already as far as checking e-mail accounts, facebook, googling things I want to learn about, sending messages to people as I like to keep track of those who are ill or struggling. Sometimes I get to the point where I just hate to have to go check all these accounts. Then there is the fact that my eyes can only take so much time on the computer before everything becomes so blurry and fuzzy I can't see anyways and I am forced to stop. My internet experiences come in small spurts of time, very small.

Over this past week I finally did get onto Pinterest and believe me I only did it to "check it out" and then I was going to forget about it. The one thing I thought would never happen was that I would become addicted to it. Darn it all, this was not in the plan. Well, I am. It is another one of my love hate reltionships. I am filling up boards with many cool things, ideas, and dreams. It really is fun and as addicting as everyone told me it would be. Ughhh another thing to check everyday. I am not able to stay on it long because my eyes just go wild when I look at all of the business of it all but that is okay.

The one thing I have to say about Pinterest is that it is wonderful for a chronically ill person, for this one at least. I scroll through the millions of ideas and I get lost. I am able to lose myself in all the pictures that stare back at me. I get lost in the dream of the shoes, cloths, etc, that take me to a place I wish I could be. I see the beautiful things and I dream of wearing them. I know I never can or will but in my mind when I see something I like and repin it I dream as I am doing it. It takes me to a calming place when I see the beautiful gardens or rooms in a home. I find myself drifting away dreaming of sitting in the beauty and it makes me feel like I am enjoying the calm serene in the pictures I am looking at. The mind is a very powerful tool when you allow it to be.

I believe when you are ill you must dream. Dreaming of the best in life and wishing you were enjoying something other than feeling like crap helps you to overcome the stuff that drags you down when you are ill. If you allow it, the bad can suck you in and you can forget what it feels like to just be. You can forget all the simple joys in life like a beautiful pair of high heels that are very sexy. You can forget the beauty in a flower and just look at it as something you will never be able to do again, plant a large garden. Or you can take the other approach. You can look at these things in your mind and think to yourself, I might not be able to wear those shoes but in my mind if I could I would drive my man crazy. Or you can buy that sexy dress and wear it for your man even if you might be staying home and eating take out pizza together. You see, it is all in what you tell yourself and all in what you do with what you have at hand. Dream and enjoy those dreams!

I am thankful for Pinterest even though it makes me think how important "stuff" is to all of us, at the same time it helps me to keep dreaming. It helps me to plan something and think humm I could try to wear that, even if it is just at home. But who cares? Really? Why do you have to be able to go out to feel good and pretty? You don't! It is all in what you do with what you have physically and mentally. Make the best of your situation even if it is just in your mind after all that is where true happiness really starts anyways!

God Bless!


Wednesday, July 25, 2012

Mini Heart Attack Time

I called in a refill to Walgreens today for my methotrexate medication and when I went to pick it up the tech told me this medication was unavailable at this time. My heart sank in my chest as panic set in, mini heart attack #1. A million questions started flooding through my small, yet smart, brain. I didn't even know what to say to her I went speechless. When I pulled myself together I asked her if they would be getting more and according to her the computer has no date for delivery. Mini heart attack #2.

I had this once before about a year ago when I was unable to get the injectable form of this medication so I was forced to go back to the pill form. The pill form is not as well absorbed in the body like the injectable and you can only take a certain amount of the dose because if you take more your body will not absorb it, if that makes any sense. It took three months after stopping the injections and returning to the pills before any major symptoms reared their ugly head. I struggled but made it through that rough patch only to finally find the injectable form at Walgreens last March. I still remember the day. Rich went to the doctor with me and said, "I will drive anywhere I have to to get this for you," as he witnessed first hand how I was suffering. We ended up finding the medication at Plainfield Walgreens and we kissed the meds when we got back in the car. That evening I give myself the shots and I felt almost instant relief by the next day. It has been almost five months now that I have been back on the injectable form and I can say the past month I am finally back to some kind of normalcy with a few bad days mixed in here and there. I am sure you can understand why the pharmacy visit today would send me into a few mini heart attack. I feel the panic of what will happen if I can't find this medication just by writing this.

I did do something that I normally would not do. I refilled all the monthly prescriptions to the day. I have a few bottles extra so my panic is not in full blown mode yet. If I were on my last bottle I would be a real mess. I am just going to pray that the medication becomes available within the next few months and I do not have to go back to the pill form. Just writing that made my heart race. Today I will inject and have a good week. I am also very happy I have enough medication to get me through Steph and Vinnie's wedding, after that I can take whatever comes my way.

This is another side of chronic illness many people do not think of. Yes, you live with your symptoms. Yes, people look at you differently. Yes, you live different than the world and most people know these things, at least the people who care about you, but then there is the other side of what you as the patient have to endure. The medications you must keep track of. The refills, just when you think you have them all taken care of another one is ready to be refilled. Then there is the added stress like this of what if the your medication is discontinued or unavailable? What do you do? There are many different medications for many different illnesses but this one, methotrexate, is in a class all by itself. It isn't like a high blood pressure med where there are many you can try, there is one methotrexate. It makes it frightening to think about what will happen to many people, not just myself, if this medication is taken away for good. I live in fear not only for myself but for all those who depend on this drug for their relief of symptoms.

Like always I will push on. I will cherish the little bit of medication I do have left and I will pray more becomes available soon. If not I, along with many others, will deal with it. What other choice do we have? Well, besides having those mini heart attacks and panic attacks, we continue to push on and do the best we can with what we have.

God Bless!


Tuesday, July 24, 2012

One Of These Days These Boots Are Gonna Walk All Over You

Remember that song? One of these days these boots are going to walk all over you. Stupid song but it makes me laugh today as my foot issue continues on and on. I have been babying this foot for six months and it is wearing me down. I have been doing it all rest, ice, compression (sort of, it just makes it swell more), and elevation. My life has been centered around foot pain. Every time I go away it is a battle to pick the right shoes that I think will not cause it to swell and ache. I bought a really good pair of tennis shoes and had custom made orthotics made, which were suppose to be "the answer." If you know me at all, what is the answer for the rest of the world, when it comes to medical issues, is never the right for me, ever. I began slowly with the orthotics and as I did my foot became worse. The original spot is better but it seems the pain decided to shift around to the other side of the foot. Enough details as I am sure you can get the point.

This past weekend I went out with my girls to celebrate Steph's last days being single. I had to wear a dress and there was no way I was going to wear my tennis shoes with a black dress. I mean really, I know I have no class, but I have enough to know that those shoes were not going to work. Plus, my girls would have gave the look and said, "Ahhhhhh NO!" if I would have even tried to wear tennis shoes. I brought my flats and wore those with gel inserts. The worst shoe for any foot problems are flats, but I was not going to even attempt any heels because I didn't need to twist and break my ankle on top of the other foot issues. After a long night at the bar, dancing a little bit, and walking more than usual, my foot decided to swell even more and the pain became much worse.

I finally, after weeks of going back and forth on the issues, called the doctor yesterday. This was my new doctor so I was putting it off as long as possible. I didn't want to scare her off the first time I saw her with any of my stupid issues. I must say I was pleasantly surprised. She listened, checked out the foot, took x-rays, and finally decided to put me in a boot. Yes, I finally have the big black ugly boot. I was thinking I could always get my girls or friends together and we could decorate it with jewels or lace to make it look a little more attractive. Nah, whatever, it is what it is. I am just happy it wasn't an infection or a broken bone. I have to wear the sexy boot for two weeks in hope that all the tissues around the foot settle down and go back to how ever they are suppose to be. I don't understand all that medical garble so I will just wear the boot and hope for the best. The best part was when I woke up to Rich's love note. he called me Boot's and said told me I still look sexy even in my boot. Sweet!

Once again this shows you how chronic illness is chronic. Most people would have recovered from this in a matter of a few weeks, sometimes longer, but not for me. It has to turn into many months. Months which become exhausting as you have enough to deal with and really do not need nor want another issue. Months of going to bed each night hoping and praying that tomorrow is the day you wake up and it all goes away. It took me at least two months to call back for this appointment using the frame of mind, "It will go away tomorrow." It didn't so I called and here I am, more waiting, but this time the waiting has a little more hope attached to it. Hope that stabilizing the foot will help it to feel better. If you are reading this and struggling, the best thing I can tell you is to hang in there. Hang on tight. The road isn't always easy, but if you keep your hope and a positive mindset then hopefully that hope will turn into reality and soon things will resolve themselves. Well, at least until the next issue attacks you.

God Bless!


Thursday, July 19, 2012

Happy Medium

Do you remember when you would hear the two words happy and medium put together as a phrase such as I wish I could find a happy medium or I wish there were a happy medium. Like all the phrases of times gone by I always wondered how certain words could be put together to mean something and how a phrase can mean one thing to one person and something to another.

Over the past few weeks I have started to work a little bit outside the home at Rich's office. Last week wasn't so bad as I was only there for a few hours total, this week it has been a few hours a day. I know, for most of you a two hour a day job would be a dream, for me it is torture. I did well Tuesday so I was happy for that. Wednesday went okay until I got sick while I was there. It subsided after a half hour but it was rough to say the least, I will spare you the details. Yesterday I felt better but after about an hour of working and bending my neck down the pain set in. My neck started to hurt so bad but I plugged along without any complaints. Needless to say it led to a rough night and today I am hurting. I am hoping the person I am helping does not want to go in today and I will have a day to rest and baby my neck pain. My foot is killing me after spending extra time getting up and down getting this and getting that. I have been babying this foot thing because I am living in fear of having to have some sort of procedure done to fix the pain. I am avoiding the foot doctor in hopes that one of these days I wake up and it will be gone, just like it appeared. Here today, gone tomorrow. no such luck yet but there is always hope for tomorrow.

I was thinking about my dream to be able to work and the impossibilities of that dream hit me. A few hours a day is torture on my body and I am wore out after only three days. I must admit it really does feel good to get out of the house and see people, talk to people, laugh, and feel like I am contributing something to the world besides contributing to only making my body feel better. It gets to be a lonely world and it could drive you to nutsville if you let it. I am going to try to keep working, but I also see I need to be more aware of my Happy Medium. It seems our minds always tell us we can do more than we think we can and then there is the pay off for forgetting the Happy Medium. We all push ourselves to do to much in one way or another but when you are dealing with chronic illness on top of it the two do not mix well.

I hope as this day goes on, as life goes on, you are able to figure out your Happy Medium. The place that works for you. As I always say, "What works for one person does not work for another." This is true in every aspect of life and applies to almost everything. Here's to us! Pushing on, doing our best, but still taking care of ourselves and finding our own Happy Medium.

God Bless!


Friday, July 13, 2012

Knocked Down Again But Not For Long If I Can Help It

I don't even know where to begin as I start to write today all I know is I need to let some things out and where better to go than to the whole world. Once again I need to write, I am not here to complain but to process what is going on with my illness and to hopefully help someone else realize they are not alone if they are having the same feelings or dealing with chronic illness issues. It is such a broad spectrum to cover when you are dealing with so much, not only physically but emotionally.

A few months ago I thought I had found a treatment plan that was going to work for me. In the beginning stages it did help, for the first few weeks I felt a shift and thought to myself, this may be it. Ever since my Osteopathic Manipulation Doc left town I have been a mess, so trying something new and different seemed like the right thing to do at the time for pain relief. With my migraines getting out of control I felt I had nothing to lose. The longer this treatment went on my migraines stayed the same in frequency, but increased in intensity. I tried to talk to the doc about cutting back on some of the work he was doing in my neck area in hopes it would decrease the intensity of the migraine, it seemed it did help. I started massage therapy on my neck and upper body which seemed to be another answer, until yesterday. I went in and after I talked to the doc he said he would just work on my hip and the massage therapist would work on my neck. I had a treatment and he moved up my back to my upper back towards the neck and did a few things. As I laid there I felt the pain coming back and as the day progressed I was back in the place I didn't not want to go back to. I went to bed not feeling well and in much more pain than usual. Then, at four am, bam, migraine. I am still suffering somewhat but pushing myself to do things. It will get better as the days goes on, it always does.

The point of this blog is more of a question of sorts, along with a point. I try in my head to deal with all the aspects of being ill. Just when I think I am doing well, it happens, something shifts. The something that I can never figure out. Maybe I tripped on a step, or I did to much physically. I know, for most people these little things are not a big deal, but for me they can send me into inflammation mode. My inflammation is not specific. Lets say I tripped or twist my ankle, for me it sets up a chain reaction in my body and not only will my ankle swell but my neck may start to hurt or my hip will become painful, on and on and all at the same time. The inflammation is not one-spot specific as most people would be, it is systematic, which means throughout my whole body. My vision becomes messed up, etc. I do not understand why some docs, even people, cannot understand that? I explain my "situation," but I seem to get the deer in the headlights look like I have no idea what I am talking about and that this just cannot be true. Well, I will tell you I know my body better than anyone and I can tell you it is true. It is funny because I can tell tell what will happen just by looking at something, as crazy as it sounds. I see a bike it looks like days of pain if I would even try to ride it. I see a pool, I see weak muscles and not enough muscle power to climb the ladder to get out. I am the expert here. I live it. It seems I have had only a few docs who get it, my two specialist and my past OMM doctor. Dr. Hayes. He could look at me, just look at me, and know. He could touch a muscle and know where I was in pain and how to relieve it. Do doctors/people really think the chronically ill would make this crap up? Seriously, if I had to make this up it would be a full time job trying to do it. To me all of this is a like a sporting event where everything changes from minute to minute. I never know what the outcome is going to be. I need people on my team. I need people to encourage me, but most of all I need people to listen to me and understand this is what happens. Just because everyone else has this reaction, mine is going to be totally different and off the wall. Trust me, I know! I think for doctors it is some kind of ego trip. I can help anyone but when they can't help you they take it personal, when it isn't personal at all. It is like medications, what works for one doesn't work for the other. Simple. I live in my body 24/7, I know!

I am not a quitter, I never have been, but when a person is chronically ill you must become you learn how to be your own coach in the game, the game of illness. I tried this new treatment for a few months and I know this treatment is not in the cards for me. It is okay. It isn't anybody's fault, it just is not meant to be. It is painful emotionally to find out what works for the rest of the world, doesn't work for me. You see, every time I try something new I have a glimmer hope. This might be it. The thought or idea of "just what I need," excites me to some degree but it also pulls me back at the same time. I still have hope. It is painful and emotional when I get excited only to be knocked down once again. It is hard when there is even a little relief and I can see a little light shinning at the end of the tunnel only to be sucked back into the tunnel as the pain comes back and drags me back down. I may be down, hurt, sad, but not for long. I will fight this until the right treatment comes along and I will not stop until I find it. I know it is there somewhere waiting for me. Truthfully I am waiting for Dr. Hayes to come back but until then, or if he ever does, I will fight! It will all be okay, really. What other choice do I/you have? We all have to keep that light at the end of the tunnel in sight and realize someday WE WILL GET THERE!

God Bless!


Wednesday, July 11, 2012

...and the story continues

If you read my last post you already know that my wonderful husband gave me an attitude adjustment the other evening, in his calm soothing voice, just by saying, "You need to start opening up to your friends about how you are really doing." Ever since he told me that I have been meditating on his statement. All I can say is, "He is right." He is and for some reason he always is. It is funny how you can know something about yourself all along but you still put up this shield so you don't have to deal with things, especially when it comes to emotional aspects of your life.

Yesterday, when I had an unexpected visit from one of my long time friends, Barb, it seemed I have begun to take Rich's advice, which I processed, and decided to open up a little. Barb was shocked when I did. She even said, "See, you need to talk too but you never tell me this stuff." I could tell she was happy and honored I opened up to her. It felt good. But I also know if I can talk to someone it is Barb. When you have a deep friendship over 30 some years you know you can trust one another. We were talking about being weak and how the world see's tears and struggling as a weakness. I was telling Barb how tears really are good, they cleanse the soul. We talked for a few hours on the porch, not solving  many problems, but giving one another some things to think about, and as I have thought more about our encounter, I have thought more about opening up. When I think of other close friends of mine that ask me how I am I always say, "okay" because I think they don't want to hear it. But I do know for a fact that they really do, so I have decided the next time one of my close friends ask me how I am doing I am going to tell them. I am going to tell them the truth about the pain and be more specific instead of a simple "okay." I am going to share my fatigue struggles. I will tell them about my muscle weakness. I am going to let it rip, to say the least. Being a person who is very good at reading body language I will be able to tell if they really do care or it is just a passing question to break the silence. I am not going to pity myself or play the victim. I despise pity, so this is not my intentions at all. I am thinking how I try to educate people on chronic illness through my blog and on facebook but in person I cover it all up with make up and smiles. I guess I am what you would call a chronic illness hypocrite. Hummm!

I believe the reason we hold all these secrets in is because we really do not want to look weak. If you watch tv or look at the world we are always being told to be happy, look good, do this or do that to be this. If you have a wrinkle get it fixed. If you are overweight go on a diet. If you are sad, go on a pill. It is so annoying to me so I never turn the tv on during the day. I can't stand the news. I am sick of politics and liars so it is easier to avoid it all. It is all messed up so why get all worked up about it? I think in some strange way all of the craziness going on in the world has made me grow a crunchy outer crust just like an m & m. Inside I am soft and vulnerable but on the outside I am as tuff as that shell never letting anyone in too far. We all just want to be loved and understood, don't worry, for me I know I am loved and understood by my Rich and the kids, but I just don't think the outside world can handle it at all. It is deep, it is scary, and it is unfixable. So what happens in return? I locked myself away in my own little prison that has held me a prisoner. I am in my safe place all the time. Alone. I don't go out much unless Rich is with me. He is my net. When he isn't with me I am messed up. In the eyes of the world I am used up goods. I do not fit into the mold of society so it is just easier to shut it all out. Well, I think it is time to take the key, open the prison cell, get out and throw the key away.

I have made the decision it is time to start just letting it all out, not just here on my blog, but out in the world. I have to stop acting like the wonder woman I once was. I have to start being who I am, broken, weak, and a person in need, more than ever of love and understanding. If people run that is okay. I really don't have much more to lose. In saying this I am surely not going to complain to anyone. I am just saying if people ask how I am doing I am going to tell. It is going to be a very hard thing for me to do. I am going to be seeing a few close friends today and they always ask how I am. I always say, "okay, how are you?" and flip it over to them. Today I am making a comitment to myself, to Rich, and to my friends to be honest about some of the things going on. Yup, there is the chance I will have tears, not a chance a certainty, but after talking with Rich the other night I am ready to take that chance. My life is hard so why do I keep hiding behind all of the glitz and glam? I know why, because the world tells me I have to, and because I don't think people can handle the truth. I always feel like people are looking at me thinking, you look to good to be sick. It is a horrible mind game, almost worse than the pain itself.

Here's to a new chapter. The chapter of letting it all hang out, so to speak. It is my hope in writing this that many of you who are reading reading it, those of you who live as I do, will take a chance on yourself and let it all hang out too. If a tear or two well up in your eyes, who cares. If people care about you they will understand and listen. If they shut you off then you will know who you can trust and you will learn yet another lesson, the ones who care and the ones who don't, and it is okay. We must stop allowing this world to control our thoughts when it comes to not being perfect. We must all knock down the walls of always being strong and perfect. The world isn't perfect, sick or not sick.We must support one another because we all have struggles, some health related, some financially, some emotionally, etc. Just being there for someone can make all the difference in the world. Listening, loving, being present, holding a hand, giving a hug, sending a card, writing a e-mail. Lets change this world one person at a time and start to care more about one another and forget what the world tells us to be, selfish, rude, arrogant. Let's do what we were sent here to do, just LOVE one another! I believe we CAN do it one small step and one small change in ourselves at a time!

God Bless!


Monday, July 9, 2012

My Dirty Little Secrets

I haven't even started writing this post yet and the tears start to well up in my eyes. Secrets, we all have them. Some of us have good secrets and others of us have bad secrets, scary secrets, or whatever they may be to you, the point is we all have them to some degree. The worst part is having to face your secrets or having to confess your secrets to other people. It seems in this day and age people just don't have the time or the know how when dealing with someones dirty little secrets. What happens? We close up. We go into our own little shell and keep all of our secrets hidden behind our smiles.

Truthfully, I don't have many hidden secrets. I don't believe in holding back and if something is on my mind most people will know where I stand or don't stand. The secrets I do hold are not ones that won't hurt anyone or make someone feel bad, they are just my own and some need to just stay in my heart right where they belong.

Then, there is the dirty little secrets. The dirty little secrets of living with chronic illness. The dirty little secrets you never share with other people. The dirty little secrets that, if you did share them, most people would just turn away or change the subject as fast as possible so they don't need to deal with your issues. So you just put on the face, dying inside, while the dirty little secrets hide themselves deep in your core.

This past weekend I was alone for four days, four long, hard days. I had too much time to think and by the time Rich got home I was about out of my mind, literally. One of the worst dirty little secrets for me is that when Rich is not with me I am a mess. I can hardly function. I feel like I am losing it and no one is there to catch me when I fall or push me on when I don't think I can do this anymore. When he got home last night it was like a weight was lifted off my shoulders. I had that peace of knowing he was here to catch me when I fell. We talked for sometime about his weekend away, sat at the table and then it happened. I fell apart. There you go, another dirty little secret, we only fall apart with the ones whom we know care, love us deeply, will listen, and know how to pick us back up. As I sat there crying trying to explain all that I have explained to him over and over and over once again, he said something to me that has caused me to think today. He told me I need to open up to more people and not just him. I never do. Of course I had an answer for that but he told me I must start to trust my friends more. If they are friends they will support you and not run from my tears. I thought about that and it seems that as I look back I am the one who has ran from my friends never letting them in for fear of pity or fear of them leaving me, so it was easier to just leave them, easier on all of us. So for all these years I have put on the face and always made everything about them. I wonder if it is time I do open up? I will ponder on this as it is very hard for me to trust people and I have no idea why.

When I think of my dirty little secrets and laying them out for people to hear it scares me to death. In my head I think to myself who would want to hear my secret that I can't sleep well because I am up all night in pain? Who would want to hear my secret that I was just cutting up veggies and my wrist hurt so bad I had to stop for a while? Who wants to hear my secret I haven't dusted in a month because I just don't care if I have dust or not?  Who cares if I try to clean my house and have to stop because I become so weak? Who cares if I have a fatigue that is unexplainable, when everyone else is tired too? Who wants to hear all my meaningless secrets while they are trying to make sense of their own lives? To me the answer is, no one. Plus, there are certain people, if I do tell my dirty little secrets to, all they will do is worry. Believe me that is the last thing I need is to know people are worrying, or pitying me, that in turn just makes me crazy the vicious cycle goes around and around. I pull back more when this happens. I have had the times that I have tried to open up and there are the people who will not even listen and go into their issues pushing mine aside like they are nothing. Really, people have no idea what so ever what it is like, so I just crawl back into my little shell of safety. It is just easier that way.

I have no idea how others handle their dirty little secrets of being chronically ill, I really don't. I wish I did. I wish I could get the answer. I have read book after book, article after article. Hell, I am an expert and know more about being chronically ill than most doctors do. Doctors are not trained to help you figure all this stupid crap out, they are there to help you feel better, not to help you accept this is what you get for the rest of your life. So for me the dirty little secret that drives me crazy the most is just that. This is it? Forever? I will never be who I was? It is like a dagger in my heart to even have to try to rationalize that thought. I know, "the new normal." Well, to tell you the truth I hate my "new normal" and I want my "old normal" back. I want to be able to go out, have a few drinks, get crazy, and wake up the next day as if nothing ever happened, but for me that isn't possible. If I do try to be my "old normal" I am sick for days. Another dirty little secret is that I want to scream, "IT ISN'T FAIR." I know life isn't fair on many levels, for many people, but this illness crap is for the birds, to say the least. I still cannot believe after living with this for so many years I am not at a good place with it yet. it makes absolutely no sense to me what so ever!

So, for now, I go on with all my dirty little secrets following behind me. If you see me out in public you will see nice hair, nice make up, half way decent cloths, but behind all of that, they are there, those dirty little secrets that no one knows about. The ones I listed here are just the tip of the iceberg. For now, I am glad I have Rich to listen to me and to calm me down and put everything into perspective. He has a way of doing that and I feel very blessed to have him. Another dirty little secret, I live in fear that one day he won't be here. I worry about what I will do without him. He is totally irreplaceable, I know that for a fact as I observe the "normal" world and realize our world is far from normal. Then i worry about him and how he handles all of this illness. it isn't easy for him either but he never lets me know that. I try not to think of it but when you are ill you have to have that one person you can count on for all the little things and I die inside worrying about him as much as he worries about me. The dirty little secrets are there, there for everyone, but we all must somehow find a way to deal with them. If someone does will you please let me know?

God Bless!


Saturday, July 7, 2012

Some Things Just Have To Be As They Are: Medrol

If there is one thing that gets me down even more than never knowing what I will wake up to each morning, it is the idea that I have to take so many drugs each and everyday. This past week I tried to cut back on my Medrol, which is a form of prednisone, but I found out, once again, I just can't do it. Sigh! I take only 6mg daily, which to many may seem like a lot but I say only because at one time I was on 40mg. I cut back to 4mg last Monday hoping I could get off this evil drug with whom I have a love hate relationship with. Sadly, within two days my eyes were buggier than ever. We went to the beach with my mom and dad and after 10 minutes of watching the boats come in to the channel my vision became blurry, had focus issues, and my eye muscles were very weak. I felt the weakness throughout my whole body. It is unexplainable to say the least what happens, for me at least, when I try to cut down on this drug. I always hope this is the time, every time I try to cut back, but always learn it is a bad idea. I always have this crazy thought of how wonderful it would be to be able to cut another drug out of my daily regimen or at least cut it down. Every time I do it I learn a lesson I don't want to learn, I can't to it. It is annoying and frustrating plus a million other things that I won't mention. One of the worst things about this drug are the unwanted side effects. Balloon face/fat face, which in the medical world is called moon face, not sure I like any of these terms. I will say I have been blessed with NOT getting one of the worst side affects, weight gain. For some reason I lose weight or stay the same on this drug. There are some days, most days, I do not even want to eat and must force myself to do so. Yay for me one good? side effect for me.

It really annoys the heck out of me when I hear someone or I watch television commercials that makes medication seem like it is no big deal. Or if I hear people talk who are on cholesterol meds and they think they can eat whatever they want just because they are on a cholesterol medication. I am dying inside everyday hoping and praying that one day I can just stop one of mine while others live with theirs like it is all just a big joke, for me it is a very serious matter.

I do my best to do everything my doctors tell me to do. I eat healthy for the most part. I try to exercise which for me is walking around the yard a few times and becoming so worn out I have to rest for an hour afterwards because of my weak muscles. My foot has somewhat decided I should not be exercising now as when I do I have more pain. It is very frustrating when one good thing leads to ten bad things.Exhaustion, fatigue, weakness, crabitis, need I go on? This heat? Don't even get me started on that.

One other thing that scares the hebegebies out of me is when I have to go for blood work every three months because of all these drugs. I have the order in hand and where is says, reason for blood work it reads: Life Threatening Drugs. That is a little bit intimidating to say the least, but I have to have the mind set that this is a good thing, at least my doctor is top of things just in case the meds start to shut my body down.

In the end, you can see by reading this that drugs suck. Plain and simple, but on the other hand I am very thankful for drugs. When I allow myself to think about all the drugs I take and I come to a decision to cut back on just one of them I find I always pay the price. Symptoms return, symptoms I would rather not live with. I do not like the side effects of the drugs either, but then as I have said before there is always a give and take with everything. I don't care if it is drugs or other aspects of life, the give and takes are always there in any given situation. For now I push on. I increased the Medrol back to 6mg yesterday and I am feeling better. Do I wish I would feel even better? Yes, yes, and YES! But this is what I get and I will do the best I can with what I have, at least until I decide to do something stupid and cut back on another drug. Hang in there friends, that is all we can do!

God Bless!


Thursday, July 5, 2012

And Then It All Changes

When I first started feeling sicker, than I had actually felt for years before diagnosis, I never thought, as I look back now, that I would be here where I am today. I don't know why all of the sudden I am feeling like I am starting from the beginning and life for me is like a recurring nightmare. Time after time just as I think I am getting better and doing so good the nightmare rears its ugly head and I am back in "that" place where I was almost six years ago trying to figure it all out. I still haven't. I try to force my mind to believe I am well. I do things that feed my soul. I think good thoughts. I love with all my heart, yet I am still there climbing the steps. The best way I can describe it, for myself at least, is if you think of the escalator at the mall. Do you remember when you were young and you would try to go up the steps but on the wrong side? You would run and try to beat the moving steps so you could make it to the top before it took you back to the bottom. I remember some people could do it, I never could. I feel like my life is that stupid escalator. I am always trying to run up the steps only to be brought back to the bottom starting over and over and over. Or just as I think I am going to make it to the top I slowly come back down or I just give in and let the steps win, dragging me to the bottom. It is a horrible feeling. Just when I think I am strong and I can do this, I back down there again. It is enough to make a person crazy, literally!

This past week I tried to cut back on my steroids. Just a little, every little bit less is better for my health, haha, but I finally realized today I just can't do it. I am tired and I gave in and went back up. Depressing or not I have to continue my regimen or pay for it. it is like someone who is depressed and when they take their meds and feel better they decide they don't need them, wrong! The heat here at 100 degrees is killing me even in the air conditioned house. Heat for me = weak, ill, and exhausted. There are the times that I just want to give up.

This week was vacation for Rich and we kept busy. Yes, it is easier for me to keep busy when Rich is there to help me but there is always the pay off. The past few days the payoff hit. I just want it all to stop. This is it? Forever? I will never be normal again? I try to put the thought in the back of my head as far as I can. I try not to think about "this being it, forever," but it is always lingering there. It seems just when I think it is gone some other physical symptom takes over, not only attacking my body but attacking my mind. Chronic Illness has a funny way of doing that. You become so tired and so wore out you are unable to even explain it to anyone. Most people roll there eyes or make stupid comments like, "Ya I'm tired too I worked all week and......." The thought in my head is that I want to scream out to them, "Well, I didn't work all week and hardly did a damn thing and I am weak, tired, and wore out so what do you have to say about that?" It sends you into your own hell, your own shell, never talking to anyone about how you really feel because no one understands anyway. The escalator keeps dragging you down even in the area of hoping someone might have a listening ear, that's all just a listening ear. No advice just understanding. Doesn't happen. People don't care they just want to fix and sometimes things just aren't fixable.

You see, when you hear of someone who is chronically ill you only think of them as the person they use to be or the person with the person with MS, or the person with RA, or the person with MG, cancer, or Fibromyalgia, etc, you never think of them as just another person. This was made all to clear to me as I was talking with someone a few days ago who was borderline diabetic. The person said, "I just don't want that "label" so I am going to do everything I can to stop it from becoming full blown diabetes." I can totally understand that statement and this is nothing against anyone, I get it. But what about us? The ones who can't exercise or eat right to make it all better? Is this really what people think of people who are chronically ill? Are we our diagnosis? A label? I don't feel like my diagnosis, nor do I feel I deserve a label. I still feel like Dianne, the person who still has hopes and dreams, it is just that now those hopes and dreams seem a little harder to reach and a little harder to accomplish. I still have a bucket list, surely not like anyone body else has, but it is still there. It may be the same one over and over, laying in the grass watching the clouds and other things that do not suck up the little energy I have, but they are still there none the less.

I pulled out one of my books on the bookshelf from years back when I first was trying to make some sense out of all of this. My life change from being a person living in the normal world, to a person trying to figure out my new way of living in this normal world. The book is called, The Lonely Patient. How We Experience Illness. It is written by Michael Stein, M.D. Yes he is a Medical Doctor. It is nice to read how at least one doctor understands it all. He doesn't write about the medial part of being ill, the drugs or the treatments in this book but the emotional side of illness. All that a patient goes through, what they are thinking, how they really are in this, all alone even though they may be surrounded by a million people. It is one of the best books I have ever read and it has helped me to realize all that I think and feel really is okay. Maybe just okay but okay none the less. I love this excerpt from the book because it is right where I am at this moment in time and have been for the past six years: "The sick need to make sense of things, yet they have a constant sense of incomprehension and a feeling of ignorance that somedays is exciting, hopeful even, and other days is anger-provoking and frustrating. During illness, as when traveling, one alternates between adrenaline and submission. Every day one lives the biology of anticipation: Whats next for me? Still, during illness there is really only one choice - to proceed or not to proceed. And not to proceeding is giving up."
I guess you could look at this as being true for all who are dealing with any type of burden whether it is health related or otherwise. In the end there really is no other thing to do other than to proceed, the way I see it there is no other choice. We must all fight the good fight. Hang on to hope and continue trying to make it to the top of that escalator!

God Bless!