Friday, November 29, 2013


When I got up yesterday, Thanksgiving Day, I thought to myself what are you thankful for? I must be honest I try to do that everyday, be thankful, even on the days I am pissed off for feeling like crap. I believe if I gave into the crap of illness and what it takes away from me on a daily basis I would not be a happy person at all. I can't let it win as I have written many times before. If we give in then there is no reason to be here and if you are here, reading this and breathing, then there is a reason you are here.

Thankful. Humm. My thankful looks different than the rest of the world. I am sure of that. Don't get me wrong, I am thankful for all the things the real world is thankful for and I thank God everyday for those blessings. After the past six months or so since stopping my arthritis medications there were the days I found it hard to be thankful for more than my family and the fact that I got out of bed on any given day. The selling of our house has added so much extra stress that I can't keep my head on straight. It is hard to explain when your body is not only constantly sending pain signals or whatever else signals to your head and on top of that having to keep a house clean to be ready at any minute to bolt out the door. Living out of the car is tiring. Pack up the crap we need and then after the showings bring it back in. I am hopeful the papers will be signed and we can put all of that behind us. Thankful for an ending to this chapter of our life.

This past week I saw a new doc and I am thankful for a really good connection. See, here is my thankful list for now, medical. I am thankful for drugs. I need them. Period. It doesn't matter how many people think, if you only did this, or you only did that, you would be fine. Yes, lifestyle helps but it doesn't take it away like the world thinks. Until it happens to you, you can never understand. When you are in so much pain or a joint is swollen, painful, and makes it hard for you to do much, even pick of your glass of water , you will never understand. I am almost sure if you this did happen to you, you would like drugs too. I have cut back but I am still thankful for drugs.

Sleep. Since my surgery and being put into instant menopause, sleep wasn't a huge issue for me. ten to twelve hours a night was the norm, now seven or eight. Last night was a much better night with a whopping eight in bed and another hour on the couch with Eva this morning. I am thankful for the nights I can get good rest to help repair my body. It helps me so much during the day when my body is repaired even by that extra hour of sleep. I am thankful for sleep.

Mornings. Mornings are hard for the first hour or two. I get up and drink a glass of water and take my handful of pills. It takes a while to feel better and to oil the joints. After that hour or two I get moving even more. The routine is wake up, stretch in bed, call Eva and snuggle with her, then get up, get the coffee and go on the computer for a bit. Then I get off the computer and get moving, for me if I keep moving I do so much better. Sitting is hard on me and I assume anyone with chronic pain issues. I don't know because I cannot compare my pain to anyone else who struggles as I have said it is different for everyone. What I deal with someone else may not and vice versa. Mornings are the best for me after the initial wake up time. I get most of my work done in the morning because as the day progresses the pain gets worse. The fatigue sets in. I'm not sure if the pain is causing the fatigue or the fatigue pushes along the pain. It actually depends on what is giving me issues. The past month it has been my right elbow, before that it was my knee, it is a constant shifting of pain that never ends. My neck is an ongoing issue that I am sure will be a lifelong struggle. But you know what? I am thankful. Thankful for mornings I can get up, wake up, and do the things I need to do. I am blessed!

Like I always say in a lot of my blog post, "I could go on forever." The list never ends. There are many other issues I am dealing with right now physically that I am sure no one really cares to hear about, hell I don't even like thinking about them, but I am thankful. Thankful for my medical team that seems to finally be getting to where it needs to be. Thankful for the air I am able to breath everyday so I can enjoy the people I love. Thankful for you! Thankful you take the time to read my babble. Thankful and hopeful it helps you make sense of your life with chronic illness or thankful it helps you understand someone else you know who lives with chronic illness. After all if we are not here to love and support one another what is the reason? Thank you!

God Bless!


Monday, November 25, 2013

The Ongoing Doc Quest

Yes I should be packing for the move but hey when the blog calls it calls and you just have to listen. I have been preparing for a new PCP doctors appointment over the past month. Yes, over the past month. I am sure when you go to the doc you don't even think about any sort of preparing besides finding the time to get there like taking the time away from your job, your kids, your life. For me it is much different. It is like an annoying mosquito bite that keeps itching and won't go away. ALL the stuff I have to write down to give the new doc so she/he can roll their eyes in amazement and probably wonder if I am a hypochondriac. I don't care anymore it is what it is. I have so many on going issues I can't even remember all of them at once, hence the reason it takes me a month to write them all down in my love note as my Rheumetologist refers to it.

My search for an PCP doc has been an ongoing issue for years and believe me I am not picky I just want to be cared for the way I should be cared for. This doc I am going to this week is a doc that my daughter worked with as her nurse in an Allendale office. I thought about switching to her long ago when Katie told me how good she was but I thought it not fair to Katie to go to a doc who would know all about me and I didn't want to put Katie in that position. You know, like every time she went to work the doc would look at her like, Oh ya your mom's crazy. It's true when you are ill you feel like that on so many levels. We all know no one understands but it is the absolute worse when your doc thinks you are crazy and blows things off. Well, long story short the doc left the practice and moved downtown by Spectrum Hospital. My mother has went to this doc even when she was at the office Katie worked at and she kept telling me to try her. My mom would tell me. "She is very good and will take great care of you." It just didn't feel right. After last years physical and being blown off by my current PA I decided I need to take control once again but this time I thought to myself I am not just going anywhere because of the convenience. I have serious issues going on and I need the right doc. I feel I may have finally made the right choice. Another reason I had I didn't change to her was that I wanted to stayin the Metro system because my Rheumatologist is a Metro doc and there is no way I am switching from her. It made appointments with her easier because she could look up any tests results I had on the metro system. Now I will have more work making sure test results are sent to her but I just had to make this switch on the quest for good care. I don't even care if I get great care, just good care. I don't need a doc as a friend I need a doc as someone who listens, gets it and takes care of me, that's all.

Finally! I have my two page essay ready for my new doc with all the info I could possible write in order to get her on the same page as me and my other docs. It is frustrating getting ready for these appointments but at the same time I am hopeful to resolve a few issues that need to be addressed. Ya, I know what you are thinking, 'She just had her suregery how can anything else be wrong?' Well, as I have wrote many times before in my blog and I am sure I will continue to say, "It never ends." It sucks and sometimes I want it all to end but then I think to myself if I give up then who wins? I can't allow the illness to win so I push on, pain and all. I do the best I can and most of all I refuse to give up on myself even when doctor's do.

God Bless!


Wednesday, November 20, 2013

My Wish...I Wish...

My wish for you, do you know that song? A Rascal Flatts song that could be sang by anyone to anyone. Of course being a mother when it came out many years ago I thought of my kids and I still do every time I hear or it play it. It makes the water begin to roll down my cheeks. After all, we only want what is best for our children, our friends, our families. The best for them, this is my wish! I was thinking about wishes one day last week and I grabbed a piece of paper and started writing them down thinking this could be a good blog entry. I filled the paper front and back and slammed it into a book on the coffee table. I totally forgot about it until Hunter pulled it out the other night and asked me what it was. I told him it was my notes and I slammed it back in the book without much more thought. Last night as I was sitting there I pulled it out and read some of the stuff I wrote and thought to myself some of these are pretty good and slammed it back into the book. This morning when I got up I thought about that paper as the sun shined in through the windows. A beautiful day. A gift and I am still here. Get that piece of paper and write a blog. I know we all have our wishes. Big ones and small ones. So here you go, my wish list:

I wish:

-People shared more of themselves and were more real. We tell or post all the positive stuff in our lives but when hurts comes we hide them away or let them go painting this picture of a perfect life. We all struggle and it is okay to share those struggles. On the other hand it is important to be able to work on those struggles and not allow it to be our identity. This is what causes the pain inside us that just mounts ups in our hearts. Think about it.

-People didn't have to suffer. Physically or mentally. You know I'm going to put this one towards the top of the list because I suffer everyday in some way physically and at time mentally. I am blessed with a great support system that keeps me grounded mentally but the pain? No one can take that away besides the drugs and sometimes they don't work or I don't take them because I want to win.

-People lived what they preached to others. It is funny to me how we can preach something to someone else but then we do the complete opposite without even realizing it. Guilty.

-I would have followed more of my dreams. My dream came true to be a wife and mother and I was fortunate to have had that but somewhere along the way I lost myself. The kids left and the house is quiet and I don't like it very much. I still am not use to having them gone. I miss the noise. My wishes are not theirs.

-I could do something big to change the world. Ya, I know we all do little things that make a difference but I am talking something big to help people around the world. I have no idea what it would be because I never took the time to think about things that I might like to do because I was raising my kids, while they were raising me too. Changing the world was the last thing on my mind because they were my world.

-There was no money. It clouds everything out in life. Money, money, money. You have to have it to live but you don't have to live to have it. It's nice to have nice things and a roof over your head but we have taken the materialistic aspect of money way to far. Like Rich always says, "It's just money. A tool. Help others." So we do, probably why we don't have much. Ha but what are we going to do bury it with us? NO so help someone who needs it more than you do.

-I could live my life over at times. I would have went out with friends the night one of my best ones was killed and held him tightly before he left. I would have stopped the hayride where one of our friends daughter was killed. STOP! Don't go! I am here to save you so the world can be a better place because of you. Life doesn't work like that so when bad things happen to the ones you love you let them go physically while your heart still loves and thinks of them every single day. Death, the one thing we will never understand until we deal with our own.

-We could hear all the answers we need to hear in whatever situation we need to hear them or at least take the time to listen to ourselves and the answers that we may already know are there, but just don't want to face them. Life is hard. Things happen. People hurt us. I was just telling a friend last night that sometimes we are pushed by someone and we swerve off the side of the straight and narrow and we have to find our way back. It takes time. Why do people hurt us? Sometimes there is no answer or explanation they just do. I wonder if they suffer as much knowing they hurt you as you suffer knowing they hurt you. Hummm Or is it sometimes the fact that people don't even realize they are hurting you at all. We become mad or offended and they have no idea they did or said anything wrong. I know that happens a lot with me because I have no filter, things just come out. Authentic to me but hurtful to others I am sure.

-I wish age didn't matter. Really! You watch tv now and if you are over 40 you are screwed. You have wrinkles? Oh my gosh you need botox or this or that. Your boobs are sagging? Get them lifted. You have fat? Oh my gosh you fatass you are going to die tomorrow. Really? I'm going to die anyways no matter how much I fall into the trap of youthfulness. Embrace age! With age comes wisdom, use it and be proud you have it. You earned it. Each wrinkle is a gift you can give to the world. Don't fall into the trap, please! Nonsense and someone is getting rich off your stupidity and men still like saggy boobs. Oooops sorry, no filter there.

-We all knew the true meaning to life and why we are here. Yes, I know from a biblical sense why but I am talking the big picture. It is crazy when you start to think deeply about it. I try not to but when you are a very deep person it is hard. I ask Rich why all the time. He rolls his eyes saying nothing at times and we move on as usual.

-We all could put our phones down and be in a moment without anything coming at us. The world is getting out of control with all this technology. I know, I sound old. I am and I'm proud of it. Wrinkles, fat, and saggy boobs. It's just that there is no down time anymore. It is always available. I/we are guilty. I ask Rich a question he says. "I don't know google it." Really, it happens everyday. I see the electronics even changing our relationship and truthfully I'm not loving it. I told him last night I wonder how we raised three kids without the internet or google. Humm we looked at each other and pondered for a minute. No answer from either of us on that one.

-I wish when people walked into a room they didn't just go for the people they know and gather in their comfort zones. It makes no sense to me but it is what it is. Kindness, it really does matter whether you think it does or not. A minute to show someone you care. I try to figure out why we avoid caring for our fellow human beings and I think the biggest reason is because we always think it has to be a huge thing we do. Reality is that it can be simple and small. People just want to feel loved and know they matter it isn't rocket science. Seriously. Take a minute to care for someone even if it is someone you don't know. In public do something nice for someone. Open a door. Smile. My favorite thing to do, smile. It blows peoples minds. I love doing it. Although I will admit there are those times I need someone to do these things for me when i am out in the world and it really does all evens out in the wash. 

I could sit here all day and write my wishes for life, not only for me, but for the world. Is it going to change anything? Probably not but it helps me to be a better person, especially on the days I don't want to be. We all need encouragement. We all need to be thankful for the life we are given even through the hardships we face that we may never get over. Follow your wishes and make the world a better place!

God Bless!


Thursday, November 14, 2013

Estrogen Blues

I'm not sure how I am doing right now. The past few days have been better than the past six weeks I will say that. I guess losing both of your ovaries at the same time can turn you into a raging lunatic. I figured since I already was on my way with the menopause thing it wouldn't be that big of a deal to be put into surgical menopause but I am learning I was wrong. The body is doing okay. My doc put me on a low dose estrogen patch after the surgery and for the first few weeks it seemed fine but then something changed. I began to get angry and pissed off at everything. My body ached more and more everyday and I complained to Rich each night about why the hell I am even here. I didn't want to see anyone and when I did my patience wore thin and I would just want to go home. I was complaining about everything. I almost had a road rage situation on Saturday where I had my hand on my door handle and I was going to go choke a guy in his truck who did something that was totally unacceptable. It took all the power I had not to get out and wrap my hands around his neck. Lucky him! I wasn't sleeping well, tossing and turning every night, all night long. All of the symptoms were so, so, so not me! Well, I finally called my doc back and went in on Tuesday and he gave me a higher dose of estrogen and it feels like a night and day difference. I hope it stays this way but if not we can go up to one more dosage of the patch. All I know is I have slept the past two nights, I am happier, and I am looking forward to going to our land today with Rich. Last week I went with him to the land but in a Maxine crabby, pissy mood. I even asked Katie if I could take Addi next week one day, something I haven't had the patience to do the past six weeks so I know we must be on the right track. I woke up the past two mornings happy and with my happy BRING IT on attitude. Today woke up with a song in my head and that hasn't been happening, another good sign. So even with all the nay sayers out there who tell you not to do estrogen therapy I for one will be on it as long as need be. Once again I am not complaining just telling my story, still a little edgy but better than last week.

Last night I happened to watch the show Hoarders. This is a show I don't watch unless there is nothing else to watch. I seem to get to upset when I watch that show for some reason. I don't think it is because of the filth people live in but more because of the mental illness that is the cause of the filth. It saddens me to the core when I watch it. I understand it to some degree as Rich's sister was a hoarder and lived a life that could be on the show. I know people watch and wonder how family abandons someone who suffers mental illness but the person who is mentally ill pushes family away and usually does not want the help, or help that is only on their terms. It is all such a complicated disease, mental illness. I wonder why we are so ashamed when we suffer. I get very angry when people say there is no such thing as being mentally ill when they have never experienced it or know of anyone who has. How the mentally ill are shoved in a corner and not taken seriously. I am glad we are beginning to see this is a real illness and beginning to understand those who suffer so. Last night the father on the show was very, very ill. It was so sad to watch and at one point I almost switched the channel but I knew as the show almost always ends he would be helped. He was helped and it ended well. I hope he continues to get treatment and can have a relationship with his daughters whom he hadn't seen in eight years. One of the daughters said something that hit my heart. He used his past as an excuse as to why he lived the way he did. The daughter spoke up and told him to stop using his past as an excuse and that everyone has negative things happen in their lives and you deal with them, learn from them, and move on. Her pain had turned into rage. A smart teenager for sure. I am can only imagine how much those two girls had learned from watching their father in his disease.

The more I think about that show and what the reason was I watched it I came to the conclusion that God whapped me upside the head once again. Estrogen? BIG DEAL! Put your big girl pants on and live the life you have been given. Although I say that to myself it isn't that easy. Going from having estrogen to not having any estrogen really screwed me up and it didn't matter how much I told myself to be happy I just couldn't be. I learned even more about not only myself but about mental illness. You can't be happy when you are lacking serotonin. It just doesn't happen no matter how much you tell yourself or wish yourself to be happy or better. I'm so glad I didn't change the channel last night. We can all learn something from everything we do whether it is a television show, going out in public, or looking deep into ourselves as to why things may be the way they are. In the end if you know something is wrong make that call. Get the help you need and be proud of yourself for taking control of yourself! Only you can help yourself and there is no reason to be embarrassed about it. Help yourself! I did.

God Bless!


Thursday, November 7, 2013

It's all Fun and Games...or is it?
I makes me chuckle when I see these puzzles floating around facebook. The first three words explain you to a tee. Really? Ha! Well, maybe on some days they might but what about those other days when you are having a bad day? Or when a someone you love gets sick or dies? Or you decide to watch the news and get so pissed off you have to switch the channel to something lovely to remind you there is still good out there. What about those days you struggle with personal issues? You might not be feeling all chipper and happy like the words tell you to on many days. Plus I laugh because we all feel these good words about ourselves but I wonder on the days that we feel them if other people feel the same about us. The days we may have pissed someone off and they are really mad at us for either speaking the truth or thinking we should have kept our big mouth shut. I'm pretty sure I do that to many people on a weekly basis and I don't even realize it. Yet, another problem with the world, we get mad at someone and instead of talking to them we clam up and let the anger build and build. Life is funny that way. When I saw this the other day, as I have many times before, I thought more deeply about it for some reason this time. Then when I left the computer I thought about it even more and wondered why they didn't have one of these for the bad days in life. I'm sure we could all put some of our own words there, some not so pretty in fact. After I thought about an anger puzzle I began to devise a chronic illness puzzle in my head. Words popped into my head and something told me to grab a piece of paper so I did. I started to write down the words of not only physical but the emotional side of illness on a daily basis. All the things no one gets unless they live it. I wonder what people would think if this puzzle popped up on facebook. Let me guess, whiner, complainer, this can't be real, everyone hurts, I could go on but I am pretty sure there would be people shrugging their shoulders and thinking this is bs, well except for those of us who live it, so I decided to myself I'm going to make a chronic illness puzzle, insert chuckle here.


N  M  I  S  U  N  D  E  R  S  T A  N  D  I  N  G  A
E  P   L U  D  R  A  C H E  S  T   I   R  E D  V W
G  M E D   I  C   I   N E  S  R  S  Q  M E X   I  C
A  L  S  Z  O  D  O  C T  O R  S  W  T  B U  W L
T  S  R  O  L  L  E  R C O A S  T E  R  O M W I
I  W Q  T  O  I   N  S  O M N I A  P  S  Q  A  L O
S  W E  L  L  I  N  G   Y  T M L S  H S  D  A  O S
E  L  P  Z  G K I   M R  T  V J  O  I  N T  S  P V
E  L Q M  H  I P  L  Y  E  H E M O T I  O N S
N  I  B  S   H X E F  A  T  I G  U E L P N O S T
E  N  O  U  C H  S  C  R E  A M  S K I  B E S Z
R  G W  E  A  K  N E S  S  R  E  S  T  T I  M E S
G  F  K  H  M U S  C  L  E   I  P  N  J  S  G   B E
Y  C  A  N  C  E  L  E  D  P  L  A  N  S  R  E  S  T 

Well, there ya go. The worst word search in the history of womankind. Lol crooked but still there to get the point across. Oh and that's another thing. You don't care if things aren't perfect anymore because trying to be perfect and do it all the way it is suppose to be done sucks the energy out of you. The energy you need keep up on the laundry, sweep, clean up the house, etc. End of story.

God Bless!


Wednesday, November 6, 2013

Chronic Illness Crap

When I saw this I chuckled but then after a few minutes of processing it I thought to myself this can be quite true. I remember when I was on my meds for the arthritis and I would complain about something hurting, not always out loud or to another person, but to myself. Stupid knee. Getting up off the floor yelling a little yip out like a puppy when they get hurt. I look back on that "on meds" pain and it makes me laugh and causes the tears to run down my face as I sit here now. My pain since thinking I am miraculously going to be cured by going off the meds is ten times worse. I get on the floor and I can hardly get back up. So very stiff all the time morning noon and night. I have to crawl to a chair or the couch to pull myself up screaming out in pain but also in between those screams of pain yelling, you can do this get up! My hands are so swollen and painful I have a hard time making a fist and opening things is getting more and more painful as the days go on. I couldn't even open a container to get my coffee out today and that is the stuff that really throws me for a loop. Try and try but nothing opens, frustration at its best.

One of my elbows and one of my pinky fingers are a swollen mess and every time I move, ouchie. The pain in that one finger gets to a point where I have to click it back into place to relieve the pain. I'm not making this up it is really, really true. I know there are the skeptics out there who roll their eyes when they read stuff like this but seriously what do I or others who suffer from chronic illness have to gain by making all of this up? Why would we make it up? Seriously? I wish all of my skeptics could live in my body for one day. I would never wish pain on anyone but just a day to see what it is really like. I can imagine many of them would want to use their free pass out by the time noon came around as the first few hours in the morning are the most brutal. I could go on but I would hate to continue to bore you with all of this chronic illness crap. Hey good name for this blog Chronic Illness Crap. I like it! It is a perfect fit.

The hardest part for me is the comments like, "Well you are fifty now." Ha, ya maybe but what about the past twenty years? I was thirty when all this started so I want to scream at people, "I paid my price. I want it done. Why?" Then having to have the surgery that put me into instant menopause hasn't helped anything. I can't even imagine the shock to my body from having estrogen one minute and then wham, none. I feel like I am not myself at all even on the hormone patch. I figured it would be no big deal, I was wrong. I keep telling Rich I hope no one pisses me off in the near future because it ain't gonna be pretty. So not me. This too shall pass. This too shall pass!

I hate to complain as I am sure some people think this is, but I don't feel this is complaining. It is my life. The way it is, at least for right now anyways. I am going back and forth with myself on calling my Rheumetologist and getting in earlier than February to see what she has to say. I wonder if I can hold off until February. Back and forth back and forth. Where I am now I think no I can't wait, but then my bullheadedness comes out and makes me believe I can and I will. I have her okay to restart the meds at anytime I want. She said when and if the symptoms get worse after stopping the meds you will know you need to restart them. Ughhhhh. I hate to have to face that reality but I have to admit my quality of life was so much better on them then it is now being off them. Side effects vs pain. Humm. For now I continue on with the pain. Intolerable at times and tolerable at times. I pray a lot along with the yelling but I make it through each day somehow someway. On my own terms and not by someone elses terms. It is all a part of the game. We all have our stuff in one way or another and we all must do what is right for us living with this chronic illness crap.

God Bless!