I have always been very vocal about the amazing group of friends that I have had for the best years of my life. They had no idea, but came into my life at a very crucial time and I am entirely grateful for them all. One, in particular, has been my rock, my go-to girl and most importantly, my best girl-friend. I have always been impressed with the person she continues to grow to be and quite honestly, she continues to amaze me...even when I know exactly what to expect from her.
Recently, a mutual friend of ours found out she needed a kidney transplant. Tracie,without hesitation stepped up (as well as many wonderful others) and began the process to see if she was a possible match. She is.
Trace, this is for you. Even though I said it to you earlier today, I decided that you deserve to hear it again. And because I want you to read and process what so many are thinking...I am speaking for the many who wish we could do what you are about to do.
You are a remarkable woman. I can't help but think that your Mom is just beaming with pride and absolute approval. This gift you are giving is beyond priceless...and has infinite rewards. YOU are saving a life. And even if something should happen and this not go as we all hope; it doesn't take away from the selfless gift you are offering to a mother, wife , daughter, sister, granddaughter and friend. And to think how this will touch many in ways you never thought possible. You are also giving the gift of hope. Hope that a husband and wife can continue to enjoy and watch their children grow, together. Imagine what this act will do for the children who will grow to know that someone, you, went to great lengths to help their mother. Think about how this will help to shape who they are to become. And, of course, a husband who will most likely struggle to find the words he wants to properly thank you for all that you are offering.
I know that this makes you uncomfortable and that your wish is to make this anything but about you. Too bad. You deserve every word, well wish and compliment. So much more is possible because you made it so. So read this, on your own and give yourself permission to accept all that we are saying to you. You are so worth it. Once again, you are giving someone a chance at a beautiful future, just as you did with each child that came into your heart and home. Roman.
Your children will also take much from all of this. You are a hero. SuperMom. Super Amazing.
Tracie, I am beyond words to express how boundlessly proud I am of you. Thank you for always being an amazing friend. I love you, my little friend. Godspeed.
Monday, November 26, 2012
Family Time
There is nothing that brings me more joy, than being a mommy. This long weekend was almost perfect. I only regret not encouraging the kids to call a friend more than I did. I reminded them, but we were so caught up in things we normally don't get to do, that nothing else seemed to matter. We crafted at our own pace while Christmas movies played in the background to help get us into the spirit. The kids went into the woods with their father to sit in a tree stand and check out the local turkey and deer. The boys went outside and played in the first snow of the season while Emily and I planned out what gifts she would make for Christmas. Everything...was done at our own pace. It was wonderful.
Tonight, we celebrated our last night of this "vacation" with watching our new family fav, Once Upon a Time. Alec was snuggled up with me. I couldn't help but smile, close my eyes and soak in every little bit of my six year old baby.And soon he was asleep in my arms. I made a silent wish. "Please, let us stay like this forever." The thought of these days being over, it overwhelming and sad, for me.
I have no idea where this all comes from. I know that I have many regrets of not slowing down and enjoying my children as much as I feel I should have. I definitely feel guilty for not being able to all the things I wanted to with them do because I wasn't feeling well these past few years. And honestly, it's the days that I am feeling really good, that I get most sad about all I feel I missed. All I know is that I can't get enough if my children. Of course, they frustrate me and I do get angry with them, but never for long. I am always so concerned about what is going on in their brilliant little minds and worry about their happiness. I am sure some therapist would have a field day with me!
I don't feel that we really ever "grow in" to the person we are. To me, that sounds like settling and ceasing to learn. I feel that I have evolved throughout the years and adapted as needed. Life is an orchard of choices. I have certainly, made some very poor choices. That includes how I have handled myself...and my children.
Nothing can prepare you for the day you struggle to properly restrain your newborn into that car seat for the very first time...and take him/her home. From that moment on, the pressure is on! The best I can describe it, from my point of view, is like juggling. WHO in their right mind decided it was OK to send these children home with ME?
When I think of all the transitions and evolving I have been through in the past 12 years while trying to pretend I have this parenting thing down (hahahahaha!), I wonder how it is even possible that my little angels have turn out to be such wonderful little people. And as they get older, it gets harder. The position of "Head Role Model" plays an even greater role in their lives. I find that I hold myself even more accountable for things because I feel they are paying attention now more than ever. I sometimes wonder if these children were placed with me to keep me on my toes. So that when I felt weary and disappointed with life, I would have to hold my head high, look straight forward and push on...BECAUSE I was under great observation. There are ALWAYS six beautiful blue eyes watching me. And should I fail to hold myself accountable, they surely will. I know who is watching me. God, all my loved ones who have passed and my children. I believe my obligation is to my children, first. Because, if I do right by them, then I have pleased God 3X over! Kind of like extreme couponing. :0)
I don't know. I think I am just overwhelmed with all the emotion that comes with being a parent. The unconditional love and acceptance is terribly hard for me to...believe I deserve. At all. I am humbled by it all. By all three of them. I am so thankful.
And seriously, who doesn't get all warm and fuzzy when an adorable child falls asleep on them after a near perfect family weekend?
This year, I am thankful for my Rheumatoid Arthritis. Although I struggle with time lost before, I understand that RA has made me appreciate and take advantage of the time I have NOW.
I hope you all had a wonderful Thanksgiving as well~
Friday, November 16, 2012
A Perfect Gift
Having our children strive to be productive, generous and aware members of society has always been something we, as their parents, strive for. I believe very strongly that this is something we lead by example as well as, work side-by-side with them to achieve. I used to worry about how we would make this happen, and then I realized they have been doing it along with us all this time. Tonight was a night I was reminded that we have been doing alright. And it made me want to do more with them.
For an assignment for Scouts, Ethan was to nominate someone he thought was worthy of a citizenship award. As I read my 10 year old's reasons for nominating this special person I realized that he really gets it. Now, his first choice was an Uncle who wasn't eligible because he lived out of state. Ethan choose him because he "serves his community everyday and is a good police officer and gets all the bad guys when they are doing bad things." We are so fortunate to be surrounded with so many that give of themselves every day to benefit others. These are people in the community who put other's needs before their own, often putting themselves in danger. These are the people my children look up to, and I hope, strive to be like.
Ethan, needs these people in his life. We all do. We all need to be reminded that giving of ourselves has bountiful rewards. But my impulsive son truly needs these constant reminders of towing the line, being responsible and making the right choice. He needs these people to help mold him into the amazing man he will surely someday be. My little man is the most compassionate child I have ever know in all my life. He is going to make a great volunteer. Along with my other two. While Emily may not be comfortable with people, she has an amazing gift with animals. She will bring comfort and compassion to God's furry gifts to us. And my little Alec, no matter what he chooses, he will bring comfort with his smile. Yes, all my children will bring something to society's table.
Volunteer organizations are suffering greatly. Membership is down and those who have been in it for so long, are burned out. No matter what the organization you are in there are always going to be the people who give all they can. And unfortunately, there are those in it for all the wrong reasons. It is entirely understandable why memberships are suffering. Just look at our society. Look at our lives. We are constantly on the run. Work, school,kids, house, meals, homework, social obligations, chores, upkeep....it is INSANE! We have 3 children with a combined average of 170 minutes of homework. If they all need help...ugh! This doesn't include the minutes all are supposed to read each night. Violin, piano, scouts. Practice 20, read 30, study. I feel terrible, but last week when I read the note that came home from religion saying that they wanted the kids 10 extra minutes several times this season for a special mass...I was irritated. Not just at our parish, just at (what seems like)everyone asking for 10 minutes here and there and wondering where and how! We strictly limit our kids to one activity each for their own sanity, as well as, ours. As it is, Ethan struggles and will occasionally melt down because he feels overwhelmed. He is 10.
Despite all this, I hope we are able to instill in the kids that giving something of yourself is truly an obligation. When I think about the reasons I love to camp, there is one that stands out from all the other reasons. The people you meet. They are fun loving people always looking and happy to lend a hand. Nobody is afraid to ask and everyone is falling over themselves to offer. This is the way the world is meant to run. We are all in this together. Somehow, a false and terribly wrong sense of entitlement has come over...too many. I don't want to blame a generation. I'd rather enlighten and somehow ignite a sense of duty.
Our children will and should grow up knowing that there are basic expectations of them. This is a gift to them. I hope that they live lives where, at the very least, their basic needs are met...through their very own hard work driven by their sense of responsibility to themselves, their families and society. And should anything ever happen and they need to rely on assistance to get them through it, I want them to be able to take it without shame and a good amount of pride. Because, I believe, that sense of pride is what will keep the "entitlement" bug away.
I will also expect that our children grow up knowing that they have an obligation to society. To contribute. To help. To engage. Somehow. Even if only for a moment. To give freely and without expectation is one of the greatest joys. Something that seems to be lost on many...but not all. As several little Cub Scouts brought to light today.
For an assignment for Scouts, Ethan was to nominate someone he thought was worthy of a citizenship award. As I read my 10 year old's reasons for nominating this special person I realized that he really gets it. Now, his first choice was an Uncle who wasn't eligible because he lived out of state. Ethan choose him because he "serves his community everyday and is a good police officer and gets all the bad guys when they are doing bad things." We are so fortunate to be surrounded with so many that give of themselves every day to benefit others. These are people in the community who put other's needs before their own, often putting themselves in danger. These are the people my children look up to, and I hope, strive to be like.
Ethan, needs these people in his life. We all do. We all need to be reminded that giving of ourselves has bountiful rewards. But my impulsive son truly needs these constant reminders of towing the line, being responsible and making the right choice. He needs these people to help mold him into the amazing man he will surely someday be. My little man is the most compassionate child I have ever know in all my life. He is going to make a great volunteer. Along with my other two. While Emily may not be comfortable with people, she has an amazing gift with animals. She will bring comfort and compassion to God's furry gifts to us. And my little Alec, no matter what he chooses, he will bring comfort with his smile. Yes, all my children will bring something to society's table.
Volunteer organizations are suffering greatly. Membership is down and those who have been in it for so long, are burned out. No matter what the organization you are in there are always going to be the people who give all they can. And unfortunately, there are those in it for all the wrong reasons. It is entirely understandable why memberships are suffering. Just look at our society. Look at our lives. We are constantly on the run. Work, school,kids, house, meals, homework, social obligations, chores, upkeep....it is INSANE! We have 3 children with a combined average of 170 minutes of homework. If they all need help...ugh! This doesn't include the minutes all are supposed to read each night. Violin, piano, scouts. Practice 20, read 30, study. I feel terrible, but last week when I read the note that came home from religion saying that they wanted the kids 10 extra minutes several times this season for a special mass...I was irritated. Not just at our parish, just at (what seems like)everyone asking for 10 minutes here and there and wondering where and how! We strictly limit our kids to one activity each for their own sanity, as well as, ours. As it is, Ethan struggles and will occasionally melt down because he feels overwhelmed. He is 10.
Despite all this, I hope we are able to instill in the kids that giving something of yourself is truly an obligation. When I think about the reasons I love to camp, there is one that stands out from all the other reasons. The people you meet. They are fun loving people always looking and happy to lend a hand. Nobody is afraid to ask and everyone is falling over themselves to offer. This is the way the world is meant to run. We are all in this together. Somehow, a false and terribly wrong sense of entitlement has come over...too many. I don't want to blame a generation. I'd rather enlighten and somehow ignite a sense of duty.
Our children will and should grow up knowing that there are basic expectations of them. This is a gift to them. I hope that they live lives where, at the very least, their basic needs are met...through their very own hard work driven by their sense of responsibility to themselves, their families and society. And should anything ever happen and they need to rely on assistance to get them through it, I want them to be able to take it without shame and a good amount of pride. Because, I believe, that sense of pride is what will keep the "entitlement" bug away.
I will also expect that our children grow up knowing that they have an obligation to society. To contribute. To help. To engage. Somehow. Even if only for a moment. To give freely and without expectation is one of the greatest joys. Something that seems to be lost on many...but not all. As several little Cub Scouts brought to light today.
Tuesday, November 13, 2012
Birds and Bees, Sausage and Peppers
So last night, while sitting at the dinner table, THE question was asked and prefaced with the following. "Mommy. I know that you have eggs and daddy has sperm thingies, but HOW do they get together?" It was our middle child asking, but by the look on their faces, they ALL wanted the answer. And I was totally not ready to give it. Certainly not over dinner.
I remember my mom giving me "The Talk". I remember it vividly. We were making dinner. I must have been about 10. As I watched her stir up the zucchini and Italian sausage in the frying pan, she gave the horrible details. Details I hadn't even asked for. But something or someone must have inspired her to find out how many shades if pink my face would turn. She was a mother on a mission. I was a daughter...mortified. To this day, my mother considers me a prude. Probably, because any time she would bring up anything having to do with sex, I would just cringe. There are things, at least in my opinion, children should never have to know about their parents. Period. When I was outed by her girlfriends for reading 50 Shades of Grey, she was giddy with excitement. Seriously. Giddy. She was so proud of me. If you were to ask her to list and rank the times she was proud to be my mother, at the top: #1 Rachel Read the 50 Shades Trilogy.
I always knew the day would come when I would have to answer these questions. And so far, I have been so proud of myself. Ha! Mrs. Smarty Pants! I'll only answer JUST what they ask. Ha ha!! So in the past when they would ask where babies came from, we would answer truthfully, saying that mommies have eggs and daddys have little sperm that fertilize the eggs. I was a GENIUS! And was entirely certain that all the other mommies would be calling ME so I could aide them when their time came. Ha ha ha!
What on earth was I supposed to say over Sunday dinner when they wanted the whole truth? SUNDAY DINNER!
And where, pray tell, do you think their father was? Somehow, in stealth mode...he "distapeered"! When I finally located and tried to lock eyes with him during the insistent inquisition, he could only turn and hide his smirk. He was physically present...but totally AWOL. I was alone.
Even our youngest, Alec was demanding an explanation. Emily was just as persistent. I was 50 Shades of Red. My mother would have paid top dollar for a seat at the dinner table last night. Somehow, I just couldn't bring myself to give them the answers they were seeking. Nor did I want to admit that this day had arrived. I also wanted to spare them any visuals that could potentially scar them for life. I needed more time.
I am sure that by now they have heard things on the bus or in school. I also know that it is our job to make sure they have the right information. A thousand thoughts went through my mind. And all I could do was redirect and distract by asking what they wanted for dessert. Thankfully, their little bellies took the bait and I escaped without having to answer. But I know I will have to.
So, I am a believer in keeping it simple. I also believe in the open door policy. I want our kids to be able to come to us. But if I appear uncomfortable, I fear they will be uncomfortable too.I am looking for some input and hoping there is a simple solution that I (The Former "Genius") may have overlooked.
In the meantime, I will be filling every moment with wholesome family fun ;0) I wonder how Ward told Wally and The Beaver about the birds and the bees. All these years, all those reruns and I somehow missed that episode.
I remember my mom giving me "The Talk". I remember it vividly. We were making dinner. I must have been about 10. As I watched her stir up the zucchini and Italian sausage in the frying pan, she gave the horrible details. Details I hadn't even asked for. But something or someone must have inspired her to find out how many shades if pink my face would turn. She was a mother on a mission. I was a daughter...mortified. To this day, my mother considers me a prude. Probably, because any time she would bring up anything having to do with sex, I would just cringe. There are things, at least in my opinion, children should never have to know about their parents. Period. When I was outed by her girlfriends for reading 50 Shades of Grey, she was giddy with excitement. Seriously. Giddy. She was so proud of me. If you were to ask her to list and rank the times she was proud to be my mother, at the top: #1 Rachel Read the 50 Shades Trilogy.
I always knew the day would come when I would have to answer these questions. And so far, I have been so proud of myself. Ha! Mrs. Smarty Pants! I'll only answer JUST what they ask. Ha ha!! So in the past when they would ask where babies came from, we would answer truthfully, saying that mommies have eggs and daddys have little sperm that fertilize the eggs. I was a GENIUS! And was entirely certain that all the other mommies would be calling ME so I could aide them when their time came. Ha ha ha!
What on earth was I supposed to say over Sunday dinner when they wanted the whole truth? SUNDAY DINNER!
And where, pray tell, do you think their father was? Somehow, in stealth mode...he "distapeered"! When I finally located and tried to lock eyes with him during the insistent inquisition, he could only turn and hide his smirk. He was physically present...but totally AWOL. I was alone.
Even our youngest, Alec was demanding an explanation. Emily was just as persistent. I was 50 Shades of Red. My mother would have paid top dollar for a seat at the dinner table last night. Somehow, I just couldn't bring myself to give them the answers they were seeking. Nor did I want to admit that this day had arrived. I also wanted to spare them any visuals that could potentially scar them for life. I needed more time.
I am sure that by now they have heard things on the bus or in school. I also know that it is our job to make sure they have the right information. A thousand thoughts went through my mind. And all I could do was redirect and distract by asking what they wanted for dessert. Thankfully, their little bellies took the bait and I escaped without having to answer. But I know I will have to.
So, I am a believer in keeping it simple. I also believe in the open door policy. I want our kids to be able to come to us. But if I appear uncomfortable, I fear they will be uncomfortable too.I am looking for some input and hoping there is a simple solution that I (The Former "Genius") may have overlooked.
In the meantime, I will be filling every moment with wholesome family fun ;0) I wonder how Ward told Wally and The Beaver about the birds and the bees. All these years, all those reruns and I somehow missed that episode.
Thursday, November 8, 2012
My RA
It has been a long time since I have been back here. There are good reasons for this. Last January, I started with the Remicade infusions. At first, there was little change in how I felt and functioned, then, slowly, I could feel the old me coming back, a bit.
This summer was full of activity for us. I was at times elated at the things I could do and the way I felt, while at others, I was frustrated that I couldn't do more. July was particularly busy and by the end, I knew I was slipping backwards, for sure.
With my rheumatoid arthritis, I have learned that if I let myself get rundown, infusions are less effective and wipe me out more. After August's infusion, my rheumatologist decided it was time to increase the dose for infusion. We also discussed changing some of my other meds. For instance, I will most likely be starting with methotrexate injections, instead of the oral dose I take once a week (Methotrexate Mondays = Tired Tuesdays...ugh). At this point, the increase of Remicade has had, in all honesty, no noticeable effect. This fall, has been such a letdown. Fall is my favorite season. I love the colors, the feel and the smells. I look forward to decorating, picking apples, making Gram's Dutch Apple cake, canning apple butter, planning our annual fall party, "September Soiree". I take pride in our home and making it warm and inviting while preparing for the colder months to come. Not this year. I cancelled the party. I just couldn't do it. In fact...I barely participated in fall this year at all. Because I felt, That. Bad.
Here's the thing. Fall didn't get cancelled because I was having a pity party, it was cancelled because I PHYSICALLY was not able to make it all happen. I had pushed my way through the summer, telling myself and everyone else that I was doing great. I wasn't. I have been slipping backwards for months. And about two weeks ago, I was starting to realize just how much.
I would lay down and my heart would beat so hard, I could feel it in my throat. I was short of breath and pressure was building in my chest. I have always had a slow and irregular heart beat. I get a couple beats and a loooonnnnggg pause before another beat. Lately, beat after the pause, comes as a huge THUMP! that can be seen just looking at my chest. I have been here before. Last time, I ignored too long and found out there was fluid around my heart and lungs (Pericardial Effusion) and was taken via ambulance from the office where I had just been given an echo, to the hospital. Two days before Christmas. Fortunately, there was a Christmas Miracle (as the nurses and doctors labeled it...and I agree!) and the fluid dissolved without any invasive treatment and I was home in time for Christmas. I didn't want to progress that far again,so I called my doctor. I always hesitate, fearing that, I am making too much of things. I am glad I did.
I wasn't going to write anything about this. But last night, when talking to my husband and finally telling him my fears and how misunderstood I feel...and again...how scared I have been, he reminded me that here is where I am most understood and that I was doing a great disservice to the many that come to read and relate and be comforted. I agree. Not because I think I am some great, inspirational writer, but because I am moving through something in life that others are too. Three times this week, I was told I was either at great risk for death, or "You could die". Death is inevitable for everyone. Ignorance is bliss. There is only so much I can do do control when my time is up. What I intend to do with the time from now until then, I intend to be quite powerful. Every day, every second, someone, somewhere is learning what their fate will be. By disease, violence...and sometimes, choice. There is a silent pride that most of us carry. As well as, a lack of self-importance. Together, those two things can be life-threatening. If I can change that for at least ONE person...
Right now, I am being monitored daily and feel like everyone has things under control. Short story. When I called, my PCP wanted me to come in. An in-office EKG showed an abnormal heart beat. They called it, bigeminy with PVC, which lots of people have. The problem for me is the long pause, the shortness of breath , pressure, pain and feeling like crap. They told me to go home, pack a bag, make arrangements for the kids because they were going to admit me overnight for observation and cardiac consult. I was in the ER for about 6 hours, they could see what was happening, gave me troprol (said to make contractions stronger), monitored me for about thirty minutes, told me they spoke with my docs and were going to send me home. I was all good with that, I could be home in my own bed. And because they told me they spoke with docs, I thought I was fine. Not so much. At 7:15 am, the docs office called and wanted me to come in for a follow-up. They were upset that I was sent home. The hospital reported that I was feeling better (never said that) and was asymptomatic. I was asked what happened in the er. I told them. Doc's words, "Liars! That has been happening a lot." Repeat ekg. No change. Pressure in my chest is a bit worse and I still feel terrible. I am sent for an echo and to a cardiologist. Cardiologist somewhat dismisses my issues and states, "lots of people have these [PVC'], I have them too." Really, so do I. In fact, I have known I have had them for as long as I can remember. Ass. Never complained about them before. Ass. I WAS SENT TO YOU...didn't decide I had nothing better going on and thought I would come and chat with you. ASS! Adding(with a smirk), "Next time, take an extra dose of the troprol instead of going to the er." I knew right then and there, this was not the doc for me. He spent 10 minutes with me. Listened to my heart for no more than 10 seconds. I cannot say whether or not, for sure, if he viewed any of my file at all. What I can say, if he had, at all, he would have know what I, thankfully knew for myself. I have a low heart rate. That is a blood pressure medicine. Doubling up...not good at all.
That night, There is greater pressure in my chest, shortness of breath is worse and I have pain near my collar bone/shoulder area and around my back (bra strap level and higher). In my head, I am wondering, if I am either having or going to have a heart attack. I know that if I call the doctor, they are going to send me to the ER (not much faith there). I am also thinking, "what if it's not? I will have to call someone for the kids, Jim will miss on sleep and be late for work. But what if it is. Having RA already puts me at risk for heart disease, not to mention it runs rampant in my family. Granddad. My Aunt who went to lay down a year ago, and never woke up. No no no. It could be the fibromyalsia. You haven't been feeling well. But what if it is not. I am also thinking about the fluid around my heart and the increase pressure in my lungs indicating the same fluid issue. And I hope it's that. That can wait until morning, right?"
I am on a lot of meds. Most people with RA are. And a new one has just been added since the last trip to the ER. Our neighbor is a pharmacist. I don't want them to know or worry...or think I am crazy, so I try to make lite of it. I need to know if an aspirin will have any interactions with anything I am taking. I get the green lite. Chew the aspirin, pray and go to sleep. Next morning, I call the doctor's office. I am told to go to ER, NOW. I hesitate. It is a lot. I don't want everyone to worry. What if it's nothing? What if they send me home again? I call back and tell them not to look for me there and I tell her that I will just do what the cardiologist said and double up on the toprol. She strongly advises me over and over again to go to the ER. I get off the phone, pill bottle in hand...put it down and try to continue the day. Noon. I am not at all better. I decide I will shower and if I still am not better, I will relent. Doctor's office calls and says they want me to come in for another EKG. No change. The nurse notices that I am dizzy when I sit up and decides to take my blood pressure and heart rate. 26 beats per minute. TWENTY SIX. Doc comes in and asks what cardio doc had to say. I tell her about the "double up". "YOU CAN'T DO THAT! NOT WITH A HEART RATE OF 36!!!". Know your body. Listen to your instincts.
I am outfitted with a halter monitor and scheduled for a tilt table test. Increase steroids to 40mg per day (CRAP! I was down to alternating dose of 5 or 10mg/day! There goes that 30lbs I have lost!). They draw blood for Cortisol and order up more blood work. I am also asked to call the next day and give a report.
While I was in there, I was very apologetic. I was. When the doc walked in,I said, "I am sorry. If you tell me right now to go in, I will." She is reassuring and comforting and tells me she understands why I didn't want to go to the ER, "Because they didn't do anything for you. But I needed to see you." The nurse is just as wonderful and tells me a story as she is wiring me up. The morale of the story was that you should always listen to your gut instinct. And that it is easier when it comes to your children, but hard when it comes to ourselves. She is so right.
There was a flurry of activity in that little exam room for a bit. Another doctor came in to talk to me about what is happening. They aren't sure, but have a plan. He explains the two avenues they are exploring. I feel so defeated and at the same time, oddly, relieved. I thank both doctors. Doctor W. says to me, "Rachel, don't feel like you need to be sorry or that you can't call. You are symptomatic. There is something going on and we are here to help. This is the exciting stuff. This is the stuff we went to medical school for." I can't believe I didn't break down right there.
This is My RA. We knew this from the start. For me, it is beyond degenerative joint inflammation and pain. It is constant low grade temps. Stiffness. Exhaustion. And worry when there is pressure in my chest and I have difficulty breathing. It is wondering when it is the right time to call. What to shrug off...and if I shrug this off, will I be OK? It is a basket full of pill bottles, constant monitoring prescription supplies and 3 pill boxes because morning, noon and night I swallow at least 24 pills, total to keep me moving. It's pushing myself beyond what my body wants me to, because I don't want to accept that I can't do something. It's scary. It's telling your husband that maybe we should hold off his "procedure"...because if something should happen to me, and should he want to have another child with someone else, we should wait. Yes, it is that scary.
I am not weak. I am struggling. This is not easy. It never has been. I have never been "unflared". The effects have been somewhat lessened, but never quieted. My RA is exhausting. Just when I came to terms with what I thought life with RA was going to be like, everything changed, again.
I know this is more common that many are aware of. Please, listen to your body. Don't take chances. And know that, just because "DR." precedes their name, it doesn't make them the boss of YOU. Two times, in three days, I was dangerously disregarded. In the three years that I have been discovering My RA, I have learned this: If you are sitting in that examination room, and it doesn't feel right...leave. Then go and find your "right". This is your life and only you can determine how you are going to live and move through it. Never again will I put my head down on my pillow at night and wonder if I have just kissed my babies and husband for the last time because I am at odds with what my instincts are telling me and what some "DR." smirked off. Never. Ever. Again.
This summer was full of activity for us. I was at times elated at the things I could do and the way I felt, while at others, I was frustrated that I couldn't do more. July was particularly busy and by the end, I knew I was slipping backwards, for sure.
With my rheumatoid arthritis, I have learned that if I let myself get rundown, infusions are less effective and wipe me out more. After August's infusion, my rheumatologist decided it was time to increase the dose for infusion. We also discussed changing some of my other meds. For instance, I will most likely be starting with methotrexate injections, instead of the oral dose I take once a week (Methotrexate Mondays = Tired Tuesdays...ugh). At this point, the increase of Remicade has had, in all honesty, no noticeable effect. This fall, has been such a letdown. Fall is my favorite season. I love the colors, the feel and the smells. I look forward to decorating, picking apples, making Gram's Dutch Apple cake, canning apple butter, planning our annual fall party, "September Soiree". I take pride in our home and making it warm and inviting while preparing for the colder months to come. Not this year. I cancelled the party. I just couldn't do it. In fact...I barely participated in fall this year at all. Because I felt, That. Bad.
Here's the thing. Fall didn't get cancelled because I was having a pity party, it was cancelled because I PHYSICALLY was not able to make it all happen. I had pushed my way through the summer, telling myself and everyone else that I was doing great. I wasn't. I have been slipping backwards for months. And about two weeks ago, I was starting to realize just how much.
I would lay down and my heart would beat so hard, I could feel it in my throat. I was short of breath and pressure was building in my chest. I have always had a slow and irregular heart beat. I get a couple beats and a loooonnnnggg pause before another beat. Lately, beat after the pause, comes as a huge THUMP! that can be seen just looking at my chest. I have been here before. Last time, I ignored too long and found out there was fluid around my heart and lungs (Pericardial Effusion) and was taken via ambulance from the office where I had just been given an echo, to the hospital. Two days before Christmas. Fortunately, there was a Christmas Miracle (as the nurses and doctors labeled it...and I agree!) and the fluid dissolved without any invasive treatment and I was home in time for Christmas. I didn't want to progress that far again,so I called my doctor. I always hesitate, fearing that, I am making too much of things. I am glad I did.
I wasn't going to write anything about this. But last night, when talking to my husband and finally telling him my fears and how misunderstood I feel...and again...how scared I have been, he reminded me that here is where I am most understood and that I was doing a great disservice to the many that come to read and relate and be comforted. I agree. Not because I think I am some great, inspirational writer, but because I am moving through something in life that others are too. Three times this week, I was told I was either at great risk for death, or "You could die". Death is inevitable for everyone. Ignorance is bliss. There is only so much I can do do control when my time is up. What I intend to do with the time from now until then, I intend to be quite powerful. Every day, every second, someone, somewhere is learning what their fate will be. By disease, violence...and sometimes, choice. There is a silent pride that most of us carry. As well as, a lack of self-importance. Together, those two things can be life-threatening.
Right now, I am being monitored daily and feel like everyone has things under control. Short story. When I called, my PCP wanted me to come in. An in-office EKG showed an abnormal heart beat. They called it, bigeminy with PVC, which lots of people have. The problem for me is the long pause, the shortness of breath , pressure, pain and feeling like crap. They told me to go home, pack a bag, make arrangements for the kids because they were going to admit me overnight for observation and cardiac consult. I was in the ER for about 6 hours, they could see what was happening, gave me troprol (said to make contractions stronger), monitored me for about thirty minutes, told me they spoke with my docs and were going to send me home. I was all good with that, I could be home in my own bed. And because they told me they spoke with docs, I thought I was fine. Not so much. At 7:15 am, the docs office called and wanted me to come in for a follow-up. They were upset that I was sent home. The hospital reported that I was feeling better (never said that) and was asymptomatic. I was asked what happened in the er. I told them. Doc's words, "Liars! That has been happening a lot." Repeat ekg. No change. Pressure in my chest is a bit worse and I still feel terrible. I am sent for an echo and to a cardiologist. Cardiologist somewhat dismisses my issues and states, "lots of people have these [PVC'], I have them too." Really, so do I. In fact, I have known I have had them for as long as I can remember. Ass. Never complained about them before. Ass. I WAS SENT TO YOU...didn't decide I had nothing better going on and thought I would come and chat with you. ASS! Adding(with a smirk), "Next time, take an extra dose of the troprol instead of going to the er." I knew right then and there, this was not the doc for me. He spent 10 minutes with me. Listened to my heart for no more than 10 seconds. I cannot say whether or not, for sure, if he viewed any of my file at all. What I can say, if he had, at all, he would have know what I, thankfully knew for myself. I have a low heart rate. That is a blood pressure medicine. Doubling up...not good at all.
That night, There is greater pressure in my chest, shortness of breath is worse and I have pain near my collar bone/shoulder area and around my back (bra strap level and higher). In my head, I am wondering, if I am either having or going to have a heart attack. I know that if I call the doctor, they are going to send me to the ER (not much faith there). I am also thinking, "what if it's not? I will have to call someone for the kids, Jim will miss on sleep and be late for work. But what if it is. Having RA already puts me at risk for heart disease, not to mention it runs rampant in my family. Granddad. My Aunt who went to lay down a year ago, and never woke up. No no no. It could be the fibromyalsia. You haven't been feeling well. But what if it is not. I am also thinking about the fluid around my heart and the increase pressure in my lungs indicating the same fluid issue. And I hope it's that. That can wait until morning, right?"
I am on a lot of meds. Most people with RA are. And a new one has just been added since the last trip to the ER. Our neighbor is a pharmacist. I don't want them to know or worry...or think I am crazy, so I try to make lite of it. I need to know if an aspirin will have any interactions with anything I am taking. I get the green lite. Chew the aspirin, pray and go to sleep. Next morning, I call the doctor's office. I am told to go to ER, NOW. I hesitate. It is a lot. I don't want everyone to worry. What if it's nothing? What if they send me home again? I call back and tell them not to look for me there and I tell her that I will just do what the cardiologist said and double up on the toprol. She strongly advises me over and over again to go to the ER. I get off the phone, pill bottle in hand...put it down and try to continue the day. Noon. I am not at all better. I decide I will shower and if I still am not better, I will relent. Doctor's office calls and says they want me to come in for another EKG. No change. The nurse notices that I am dizzy when I sit up and decides to take my blood pressure and heart rate. 26 beats per minute. TWENTY SIX. Doc comes in and asks what cardio doc had to say. I tell her about the "double up". "YOU CAN'T DO THAT! NOT WITH A HEART RATE OF 36!!!". Know your body. Listen to your instincts.
I am outfitted with a halter monitor and scheduled for a tilt table test. Increase steroids to 40mg per day (CRAP! I was down to alternating dose of 5 or 10mg/day! There goes that 30lbs I have lost!). They draw blood for Cortisol and order up more blood work. I am also asked to call the next day and give a report.
While I was in there, I was very apologetic. I was. When the doc walked in,I said, "I am sorry. If you tell me right now to go in, I will." She is reassuring and comforting and tells me she understands why I didn't want to go to the ER, "Because they didn't do anything for you. But I needed to see you." The nurse is just as wonderful and tells me a story as she is wiring me up. The morale of the story was that you should always listen to your gut instinct. And that it is easier when it comes to your children, but hard when it comes to ourselves. She is so right.
There was a flurry of activity in that little exam room for a bit. Another doctor came in to talk to me about what is happening. They aren't sure, but have a plan. He explains the two avenues they are exploring. I feel so defeated and at the same time, oddly, relieved. I thank both doctors. Doctor W. says to me, "Rachel, don't feel like you need to be sorry or that you can't call. You are symptomatic. There is something going on and we are here to help. This is the exciting stuff. This is the stuff we went to medical school for." I can't believe I didn't break down right there.
This is My RA. We knew this from the start. For me, it is beyond degenerative joint inflammation and pain. It is constant low grade temps. Stiffness. Exhaustion. And worry when there is pressure in my chest and I have difficulty breathing. It is wondering when it is the right time to call. What to shrug off...and if I shrug this off, will I be OK? It is a basket full of pill bottles, constant monitoring prescription supplies and 3 pill boxes because morning, noon and night I swallow at least 24 pills, total to keep me moving. It's pushing myself beyond what my body wants me to, because I don't want to accept that I can't do something. It's scary. It's telling your husband that maybe we should hold off his "procedure"...because if something should happen to me, and should he want to have another child with someone else, we should wait. Yes, it is that scary.
I am not weak. I am struggling. This is not easy. It never has been. I have never been "unflared". The effects have been somewhat lessened, but never quieted. My RA is exhausting. Just when I came to terms with what I thought life with RA was going to be like, everything changed, again.
I know this is more common that many are aware of. Please, listen to your body. Don't take chances. And know that, just because "DR." precedes their name, it doesn't make them the boss of YOU. Two times, in three days, I was dangerously disregarded. In the three years that I have been discovering My RA, I have learned this: If you are sitting in that examination room, and it doesn't feel right...leave. Then go and find your "right". This is your life and only you can determine how you are going to live and move through it. Never again will I put my head down on my pillow at night and wonder if I have just kissed my babies and husband for the last time because I am at odds with what my instincts are telling me and what some "DR." smirked off. Never. Ever. Again.
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