Blogging Is Hard

wonka

 

I’ve written about 10 blogs since my last post. Most were about how hellish it was waiting for my genetic testing results. I decided they were all too boring and never posted them because I was whining. They told me the tests would take 3‚Äď5 weeks and I tried to be optimistic, which is not my strong point. I told myself I’d get the call in 3 weeks…then 4…then 5. Then I called to see if there was a problem, but nope. They just weren’t back yet.

Seven weeks later I got the call while I was teaching a class but I saw it was the hospital and answered it anyway. Happily I can report that my genetic testing is fine. I did not have the BRCA gene mutations or any of the other mutations they tested for. This was a HUGE relief.

I attributed my horrific anxiety to the waiting. Though I can’t say it was on my mind all the time, I figure subconsciously it was adding stress. I was waking up with panic attacks and that panic feeling would last all day unless I took a Xanax. I tried everything. Running (well as much as a girl with rheumatoid arthritis can run) did help.

I have one of those Couch to 5K apps and though I’m at a point where the running intervals are too long for me, I still keep going , or at least I was until the last two weeks. We’ve had temperatures over 90 every day and running doesn’t even remotely sound like fun. Instead, I spend 30 minutes swimming laps (again…RA girl, not a strong swimmer, sometimes with a damn pool noodle but kicking my legs the whole time and moving my arms). It’s enough to get my heart rate up and I’m doing something.

Even with that and the relief of my genetic testing news, I’m still struggling with my anxiety. I’ll hear the smallest thing and that will be it. Or sometimes it’s nothing specific and it will just come on out of nowhere.

I’ve been into my essential oils. I don’t want any of my doTerra friends to jump on me here because I love my doTerra oils, but I’m a broke girl…I found a few blends online that I have been diffusing that I think have really helped with my anxiety and they are like $4. I do think there is a correlation between scent and the mind. It doesn’t take the anxiety away, but it helps me.

My vent of the evening is probably one most people have at the moment. Have you had enough of people arguing politics on Facebook, Twitter, etc.? I try to stay out of it. Our country is in a scary place right now and I try and listen with an open mind when people talk. I can’t stand people who are so far in either direction that they can’t have a conversation and listen to someone else’s views. If that’s you, you are part of the problem. We need to get back to being able to listen and disagree without all hell breaking loose.

The Internet changed that for us. Memes changed that for us. We never had Bush/Clinton?Perot memes, but boy some of those would have been funny.

I have one Facebook friend who endlessly posts anti-Muslim things. I try to understand where it’s coming from and it’s a place of fear. She’s afraid for herself, her family, her country. I understand the fear. I don’t understand blaming an entire religion when we have many Muslim Americans fighting in our military against ISIS.

I don’t know that I’ve ever been political on this blog. I’ll probably get a slew of mean comments, and I guess that’s okay. People have their strong beliefs on what needs to be done. I’m one of those people that is somewhere in the middle. I think we have two crappy choices and need to decide who will be the lesser of the evils.

Maybe they are both great people. I am just not sure I think someone who gets into a 7 or tweet Twitter war with a celebrity in charge of when we declare war. On the flip side, there are huge trust issues with Hillary and I’m not sure she brings the kind of strong arm protection we need as a country right now.

What I’m trying to say is I have no freakin idea and I’m going to watch each and every debate. But anyone who thinks they are changing someone’s opinion with a meme on Facebook, I’m sorry. You are making yourself feel better about your decisions. That’s all.

So RA? How’s that? Well me sed rate is down. My C reactive protein is down so all that is good. Overall I feel well. It’s the summer. I do better in the warmth. I can swim, which helps. I have had a few days of stiffness and pain where I’ve needed some pain medication, but very little more than muscle relaxers and Alleve. I’m counting my blessings and taking the reprieve from the intense pain for as long as I can.

I hope my autoimmune friends are all doing well too!

 

Genetic Testing…Here We Go

I suppose it should be enough having rheumatoid arthritis and fibromyalgia. I suppose that added extras of Raynaud’s, migraines, insomnia, and hyper mobility are just things I’ve gotten used to. But when I went for my yearly gynecological exam this year, I was prepared when my doctor thought it was time for me to have a generic counseling session.

I had asked years ago about an elective hysterectomy since my mother died at age 43 of ovarian cancer, but I was told they usually wait until menopause. But for some reason when I mentioned that I was nervous this year because I just surpassed my mother’s life span it prompted her to want me to go.

So what do I do after making the appointment…it’s me…I research the hell out of everything. I thought they were testing from the BRCA 1 and BRCA2 gene mutations which are linked to ovarian and breast cancer. I had my meltdown. Not because I was afraid of a hysterectomy. I think I’ve always kind of been ready for that after I was done having kids, but when I started reading how many people were going the whole Angelina Jolie route and also having the double mastectomy as a preventative surgery.

I don’t have breast cancer in the family, but the genetic counselor did say that usually by the time ovarian shows up on an ultrasound, it’s stage 2 cancer and aggressive. I’m okay with the hysterectomy. What I hadn’t thought about is that there is a 50% chance that if I have the gene, that I passed it on to my kids.

As a mom, you feel you can take on anything, but not my kids. The thought of my kids getting sick, or not being able to have babies is devastating. I know that even by then there will more advancements but I’m scared.

I had my blood drawn on Monday and they said it would take about 5 weeks. It usually takes 3, but since I have primary and secondary insurance it would take a little longer. I’m trying to focus on the good in my life and not the possibility of surgery.

I just had a clear mammogram and my pelvic ultrasound showed a cyst on my left ovary which isn’t a new thing. With PCOS, it’s a common thing, actually. They’ll recheck it in a month.

I don’t know if anyone reading the blog has been through the genetic testing or a complete hysterectomy. But any insight into recovery is appreciated. Feel free to message me through the blog if you are uncomfortable commenting publicly. I just want to know how long I’m going to be down with a laporospic surgery. I have a lot of reading to do in 5 weeks but nothing beats a first hand story.

I actually thought I was walking around doing really well ignoring my wait for the results until my phone just rang and I saw the genetic counselor on the Caller ID. My heart dropped thinking if she was calling this soon it was bad, but instead she needed another number off my insurance card that was messed up on her copy. Way to give a girl a heart attack.

This is going to be a long five weeks.

I Hate Youth Baseball And Other Musings

 

There I said it. I hate youth baseball. It’s supposed to be fun, and I’m sure for some parents it is. For me, it’s hell. My kid isn’t good. He tries. He practices. He wants to be good. He actually hits really well at the batting cage and in lessons, but he gets up to bat and loses it.

Tonight we played his rival team. I call them his rival team because their coach used to be our assistant coach, and he used to be a very good friend of my husband’s. He’s not an awful guy, but he clearly thinks my kid has zero talent and preferred him being on the bench, even when his own two kids were not exactly stellar.

My son has a hard time letting go of that, and the chip on his shoulder couple with this guy’s twins making fun of my son made this game an important one. We beat them last week 11-5, but tonight there was also a middle school band concert. We were down two good players, and they were missing quite a few weak players. It changed the dynamic of the game.

That all being said, my son blew it in the last inning. He had the chance to catch two pop flies (look at me with the baseball lingo) and he missed both of them. I immediately saw the heartbreak on his face. I knew for him, that was the biggest failure he could have.

Needless to say he came home devastated. I didn’t try to talk to him at the field because I thought he needed a little space, but when he came home I hugged him and he hugged me back and started crying. That’s not something he’d normally do, but I knew he was crushed. I knew all he saw ahead of him was torment torment tomorrow at school, and worst of all I knew he felt he let his whole team down.

I could explain to him all day things that other kids did that added to the loss (and there were quite a few) but we lost by one point. It was a good, solid game. But my son is heartbroken and I can’t fix it.

I hate this part of parenting. I know I’ve written about it before. My son is a kid who really wants to have this great natural athletic ability, but just hasn’t found his way. The only thing he does exceptionally well at is golf. Of course I intend to encourage him with that, but I also don’t want to make him feel like he should give up on baseball.

It’s a fine line. I don’t want to set him up for failure. I want to teach him he needs to work hard if he has a goal, but watching him fail over and over is killing me.

Now next week I’ll miss his game due to my daughter’s chorus concert. Just my luck the kid will have the game of his life and I’ll miss it, but all I want is for him to have his one shining moment. Is that too much to ask? He’s not going to be the star and that’s okay. I do think he can be a solid player, though, if he can work through the internal stuff he has going on when he gets up to bat.

Of course I’m mom, and I’m talking psychobabble. What do I know? I know that watching your kid hurt sucks. That’s all!

Motherhood: The Perpetual State of PMS

She_Believed_She_Could_So_She_did_bracelet_-_silver_large

Well, ok motherhood doesn’t come with bloating, but the emotional highs and lows of being a mom closely resemble my hormonal change during the month. I won’t lie. I’ve always been that person that gets overcome with emotion and cries thinking about a moment. What someone put into something; what it must feel like; etc.

My children mock me because I cry at every one of their events from First Communions to dance recitals, to football banquets. It’s jut a known family fact that if my kids are doing something special, in all likelihood I will cry. I tell them it’s my God-given right as a mother.

Today my oldest daughter, who is 11, had a recital with her vocal coach. She is my shy kid. It’s not easy for her to get up in front of people and she panics. When she panics, I panic for her. I decided in the car the other day that I’m like an empath. I take on other people’s feelings. I’ll get back to that in a moment.

Last year was the first year she sang alone and she did fantastic. She completely broke down during intermission and didn’t think she could do it, which then had me on edge wondering if she was truly going to be able to do it and what we’d do if she ran off or it didn’t go well. I wasn’t going to let her back out because I knew she could do it, and I knew she had the talent. There is no way I’d force her to sing in front of an audience if she wasn’t really ready to do so.

This year she shocked me and chose a song that was really hard. It switched keys in the beginning and switched octaves later on. The good news was she was singing BEFORE intermission this time. She would get it over with and not have to panic for the entire recital.

I dropped her off to warm up and my younger daughter and I went to a few stores to kill some time. I ended up buying my daughter a bracelet that says, “She Believed She Could, So She Did.” It’s a struggle to get my daughter to believe in herself. I wanted to get her something to remind herself that she needs to remember she has the strength inside to do whatever she sets her mind to.

As I stood in the store choosing the bracelet in tears (again), my younger daughter who does not sugar coat said, “Mom, pull yourself together.” (She’s 9.) I was blessed with my youngest daughter for a reason. She challenges me a lot and will likely be the cause of all of my gray hair, but she make me laugh like no one else can, and she says exactly what she thinks which is mighty refreshing.

I popped a half a Xanax when we got to the concert, don’t judge. I did okay through her groups numbers, but the solo killed me and I cried the whole time. Oh I tried to cry quietly, but apparently I made everyone in the rows across from me cry because they were watching me cry. But, my daughter sang beautifully and I was so proud.

Later we went to dinner and once again my kids were asking why I cry so much at events and I think my son was wondering if I cry in particular at his events. I’ll admit I don’t cry during football at this point. I cried the first time his name was announced. I cry at the banquets when the coach is speaking about him, but he doesn’t always catch those moments. My son has been struggling to find his place in the world of sports. He desperately wants to be a great baseball and football player and maybe he will be, but right now he’s just okay. But when it comes to golf, the kid is amazing.

I turned the subject to golf and said, “Well someday when you’re playing at the Master’s, I’ll be at the side of the putting green sobbing while you’re trying to make a very important putt.” I also asked if he’d wear pants with flamingos on them if he was going to be a professional golfer but I was completely shot down on that.

My kids are all kind of finding their own way and it’s a good thing, but they are getting big and it’s just a new phase for us. My son does baseball, football and golf. My oldest daughter was just offered a spot on a dance team, and my youngest has moved away from dance and found a great love of gymnastics. Honestly, I could care less what they pursue as long as they are active and happy.

Back to the empath issue. When I was driving the other day I was thinking about a friend that was going through a difficult situation. Immediately I can put myself into her shoes (as much as possible) and feel that devastation to the point of almost a depression. It can also go the other way. When a friend has a wonderful success, my feeling of happiness and joy for them is very intense, like I can feel the joy they have inside. I decided I’m an empath and that’s not a good thing.

It causes me to have some highs and lows that really have nothing to do with me. Do I sound crazy enough yet? Eh…it’s a blog. If I’m crazy, I’m crazy. At least I’m honest about it.

In other news, I’m down 20lbs. I still look terrible and heavy, but I’m down two pant sizes. I need to be down two more before I’ll really celebrate, but it’s a start. I was gaining 2-3 pounds per week with the medicines I was on for chronic pain, rheumatoid arthritis, anxiety and birth control.

I am off meds for chronic pain, and yes…I’m in pain. No Alleve doesn’t fix it, but moving often helps. I hate when people tell me that, but for me it has helped. My neck has been pretty bad lately and that’s been tough, but other than that I’ve really been okay. As I mentioned in a previous blog the anxiety has been rough.

My new combo of meds is allowing me to lose some weight, though. So for that I’m thrilled. I have a lot of work to do, but I’ll just keep walking/moving/jogging and cutting down on late night eating, which is darn hard when you’re an insomniac. I get hungry at 2AM!

So I’m going to try and sleep before I get up and eat something.

 

 

Explaining Things to Kids…

63396ed3a1ae4fb1579fbec9495fdefd

I didn’t expect to have a heart to heart with my youngest daughter tonight. Actually, all I really wanted to do was come home and go to bed. Yesterday was my birthday and somewhere around 3pm my headache went from bad to horrific. Since my new insurance decided they weren’t going to cover the only medication that has ever worked for me (Maxalt/rizatriptan) I was forced to try a new medicine.

As any migraine sufferer knows, once you find something that works, the last thing in the world you want to do is try anything else so this came as quite a blow. But, here I was about to try my new medicine. At first I didn’t think it was doing much, but we went out for sandwiches about 40 minutes later before bringing the kids all over God’s creation for their activities and I thought I was doing okay. Then I got in the car and it all went to hell from there.

I got clammy and nauseous and had a plastic bag ready in case I needed to throw up. I laid in the car while my daughter was at gymnastics, just trying not to puke. I managed to keep everything down until we got home and then there was just no stopping it. I felt awful. The pain from my headache seemed to subside, but I was nauseous and vomiting terribly.

Fast forward to today, which I spent in bed because a night of puking does wonders for a person with an autoimmune disease. I was shot and all I could do was rest. We had told the kids that we’d go to dinner, though, since we really didn’t get to celebrate the night before.

Let me start by saying my kids need to work on their table manners. They drove me nuts at dinner. On the way home my daughters driven the car with my and my youngest loves to hear stories from when she was a baby and when all of them were little. She asked who was the first person to hold her and I said that she was my only baby that the doctor immediately handed to me without the nurses taking to weigh and clean off, etc.

In hindsight, this is probably why she was my best breastfeeder because she started from right away. My daughter asked if it was the same for the other two kids and I explained that no, daddy held them and then the nurse took them to weigh and do a screening right there in front of us and then I got to hold them.

She asked why she was different and I guess I thought we’d been through it before and it shouldn’t be anything new. I don’t lie to my kids so I explained that my doctor knew how worried I was about her because her legs and feet were very twisted and we didn’t know if she’d walk or the extent of what was wrong.

I didn’t tell her I was afraid to look at her, but I was. I was petrified to see how bad it was, but I have the most wonderful doctor who had been with me through several miscarriages and three hellish pregnancies. She knew me. She knew I was afraid to see her, so she didn’t even let the nurse touch her. She handed her to me as she was, a little bloody and messy, but so so beautiful. I told my daughter that as soon as I saw her I wouldn’t let anyone else hold her and didn’t want to let her go.

I looked at her and she had tears in her eyes as she asked why her legs weren’t normal. While I don’t lie to my kids, I also don’t tell them things they don’t need to know at 9 years old. She doesn’t need to know that she had a twin that died and that she was crushed in utero. How would that help her? That would only leave her with questions and sadness. I explained that the way she was positioned in my tummy left her very cramped and her legs didn’t have room.

I know she had seem pictures of herself in casts. Maybe it was so long ago that she had forgotten but she had casts from her toes to her upper thigh from 3 days old to 6 weeks, that were changed weekly, each time adjusting her feet to turn a bit more.

I said to her as a mommy I was scared. I didn’t know that she’d grow up to be able to do all the wonderful things she can do now. She’s my kid that never stops moving. Currently her latest obsession is gymnastics and it’s all she wants to do and talk about. For the kid who our 20 week ultrasound we were told “many people years ago would have aborted for this because it often goes along with neurological issues” to my funny, crazy, spitfire who is always running, jumping and dancing…it’s been an interesting road.

I was sad, though, that she didn’t remember or that it felt like she didn’t know this. I have never hid anything, but at 9, it’s just not a huge part of our life anymore. She still sees the orthopedic doctor every so often because she has hyper mobility and they keep telling me as she gains muscle that will help (so far she’s still able to bend like a pretzel).

It just broke my heart to see tears in her eyes that she was born perfect. First, no one is perfect and though she knows that, she didn’t get that there was something really wrong. It led to a long talk about my relationship with her as a baby and how I kind of became overprotective and a bit of a baby-hog. I was so convinced she needed to be protected (don’t even ask me for what, looking back I’m sure I had some kind of postpartum depression) that I just wanted to hold her and love her.

My other two kids were amazing with her. They loved her from day one and wanted to help. I was so blessed because I didn’t have the whole sibling rivalry on top of everything else. In fact, they mostly fought over who was going to help get her a diaper or hold her, etc.

We are very lucky that my daughter is okay, though I get very stressed for each orthopedic appointment that they will tell me she’s going to need some kind of surgery. Our next appointment is in June and we’ll cross that bridge when we come to it.

Even though I wanted to go to bed, my conversation with my daughter was so important because I know she went to bed knowing how much she was wanted and loved and that from the very moment I saw her, I loved her with all my heart and never wanted to let her go. It doesn’t hurt that she also feels a little special that she’s the only baby the nurse didn’t insist on weighing, etc. before handing them to me. That bonding moment is something I’ll never forget.

I miss having babies. My kids send my over the edge on a daily basis, but there aren’t even words to describe the intense love I have for them. They are my everything. They are what I’m most proud of; what I’d do anything for.

So not really an autoimmune blog tonight, but this situation really hit me hard. Someday I know I need to tell her she had a twin…mostly because her siblings know and I don’t want her to hear it from them, but I worry that she’ll start feeling like a part of her is missingūüė¶

These things keep me up at night.

Aside from still being nauseous, my joints are not the best today, but still not horrid. It’s like they are just saying…hello, we just want to remind you we’re here and we could start casing pain at any given moment. I know. I know. I’m taking it easy!

 

** Disclaimer: the pic above is not my daughter, but another baby that needed the same Ponseti Method of casting. My daughter’s legs were a tiny bit more severe in terms of the beginning stage, BUT…they were deemed not to be what is considered “clubbed feet” which is what can often go along with neurological issues. Hers were positional based on being crushed be her twin in utero. The pic was just to give an idea because it’s hard to describe.

 

 

 

 

Anxiety Sucks

My past few weeks have been filled with a lot of panic attacks and anxiety. Actually I’m not sure they are panic attacks, but they are what I’d consider panic attacks. I get this feeling ¬†of anxiety, a little tightness in my chest, I feel like my heart rate is fast, but it isn’t, and I just find myself unable to calm down even with deep breathing.

Kind of sounds like a heart attack when I write it out that way, but at the moment I need to stay off WebMD. I know it’s anxiety. I have had a lot on my plate. I worry a lot in general. I stick my foot in my mouth quite often and deal with the repercussions, which require a significant amount of my time stressing about how to deal with things.

I worry about my kids. Am I doing enough? Am i doing too much? What am I doing wrong? My son has been downright nasty lately. Maybe you can say it’s that he’s almost 13 and that’s typical, but dear lord.¬†He walks in the house and immediately starts being nasty to my youngest daughter. He goes out of his way to be mean.

He argues with me constantly because clearly it’s my fault that he’s in special education for a reading disability and he wants me to tell the school he doesn’t need to go anymore. And he just won’t let things go. EVER! He will talk about something until you want to give in…that’s the plan, I think. But I don’t fall for it.

He recently went off his ADHD medicine and I’m beginning to think this was a bad decision. I feel like it’s adding to his behavior issues. I don’t want to be constantly arguing with him or telling him to calm down. He’s an amazing kid. One on one, he’s so awesome, but he’s so freakin selfish. I just don’t get it.

If his sister’s get to do anything, he gets angry and needs to do something better. He does a LOT! We may not be rich, but we do a lot for our kids to be able to do the sports they want and activities, etc. Out trip to Disney almost sent me over the edge. Any time his sisters wanted to go on a ride he didn’t want to go. If he wanted to go on something then the group could be happy and have fun, but if he was miserable, we all were miserable.

I need to talk to someone about it, or bring him back to therapy because I am at my wit’s end. It’s adding to my stress, but certainly not all of it.

I feel like in my 40s I shouldn’t be worrying about childish games that girls play, but some people never grow up. The gossip and nastiness never ends. It’s not one thing in particular, but rather a general feeling of no longer being included. There is a part of me that’s really okay because even I know I don’t fit in. I’m far from the cool kid, HAHA. But I guess it’s that I don’t know what I did that’s bugging me.

What I’ve decided is to handle it differently than usual. I need to look at people for who they are. I have a lot of really terrific people in my life. I may not be that person who goes out every weekend and posts pics all over FB drinking with my friends, but I have friends that make me laugh, smile, and that I know have my back as I have theirs.

So back to the anxiety…I think that with everything going on it’s this breaking point and at random points through the day my body just says, “ok I’m done, you need to stop now.” I don’t like medicine, but I have been taking a half of a Xanax when I need it. It helps takes that edge off and then I use my breathing and some essential oils. I won’t push those on anyone, but I’m starting to use them and I think for certain things they do help me.

I’m not crazy trying to cure everything with them, but headaches, relaxation, stress, sore muscles, etc., they work pretty well.

My only good news (other than my friend from my last blog is doing magnificent and is already home from the hospital) is that I think the change in medication has finally allowed me to start losing weight. I was gaining anywhere between 1-3 pounds per week for over a year. Nothing I did would stop it. I exercised like a maniac. Tried every diet plan…everything. I was eating under 1000 calories a day and wouldn’t lose a pound.

A few months after a medication switch I’m finally seeing the weight come off. I am down 20lbs since November, but 10lbs since February. This is huge for me. I couldn’t get the scale to move forever.

I’m also feeling well enough to lightly walk and jog on the treadmill. I’m slow as hell. I’m lucky is I can jog for 3 minutes, but I keep going and I feel pretty good. I was so diligent before we left for Disney and I need to get back to it. My FitBit was keeping me accountable. I’ll get back on track tomorrow, though I’m sure I’ll be going backward in stamina.

Anyway, this blog was all over the place. That’s how scattered I’ve been. Maybe I have ADHD. I’m old and crotchety and I think in my old age I am less tolerant of people who are fake. I don’t have time. I am working hard to surround myself with happy people. It’s not easy letting go of friends that have been around for a while, but let me tell you, Facebook has this new acquaintance feature. It’s fabulous!

You can list your friends as acquaintances and choose not to share things with acquaintances. I decided I didn’t need the people that I don’t really see or talk with to have access to my posts, pictures, etc. I’m not deleting them. They can see my comments, etc. just not every post. I LOVE that! It’s helping me not be an unfriending bitch while still keeping things private from those with whom I question their trust.

I’ll try not to be so scattered next time!!

 

 

God Is Good

img_19

Truth be told, I’m not overly religious. I believe in God. I don’t debate with non-believers. I accept people whatever they choose to believe. But in times of need even those of us that aren’t very religious (I mean I go to church…some Sundays, but mornings are not easy with RA) even turn to God and pray.

I did that this week. For the past year my friend has been dying. Her kidneys were failing and her only option to live was a transplant. Many, many people were tested for to be a live donor, but my friend is a very rare match.

A few weeks ago I was chatting with her on Facebook. In the middle of our conversation she got the call that there was a kidney match and that she was second in line. If the first in line could not take the kidney for whatever reason, she would need to be prepared for surgery. I spent so much time praying, not just for my friend, but thinking of the poor family that was likely approached by a nurse of a doctor after the loss of a loved one regrind organ donation. I prayed for them, that somehow the organ donation, at some point, would give them some sort of peace that a part of their child lived on in someone else.

It wasn’t my friend’s miracle that night. The first person in line accepted the kidney. That was how it was meant to be.

Fast forward to Thursday night when I got a message from a mutual friend that she was on the way to the hospital. A kidney match was on its way. This was it.¬†Somehow as much as I had prayed for it, it just happened so fast and it sounds so stupid but I wasn’t ready. Lord knows, it didn’t matter if I was ready for anything, but I was in a complete panic not knowing if I’d hear from her before the surgery; if I’d get to tell her I knew she was going to be fine and that I love her.

There were five of us on a group chat of Facebook and we were all in the same boat. Hoping. Praying. I didn’t sleep much but when I did wake up Friday morning she was in the hospital waiting on the kidney. I believe the first update was that it would be there at noon.

I did get to chat with her, which meant the world to me. I just needed to hear she was doing ok, though I’m sure she wasn’t. She’s so strong and I admire her strength so much. She handled all of this with grace and humor, but I know she was terrified, just as we were for her.

Later we got another update that the kidney would be there around 5pm. I’m not sure what I was thinking. Maybe I watched too many episodes of Grey’s Anatomy, but I assumed there would be a chopper flying the kidney in. (We’re talking across a state not across a country.) To ease our own stress, the five of us friends in waiting joked that perhaps a kid on a bike was bringing it in, or maybe it was coming by carrier pigeon. You’d be surprised what makes you laugh when you’re stressed out.

We received word that along with the kidney, another¬†organ was coming for a different patient and that took priority so that surgery would go first and my friend’s would be immediately following. With no timeline, we were just told “later.”

I’m not sure what time it was that I randomly checked in but at that moment¬†she said she was going in right then and needed to call her kids. What that phone call was like I can only imagine, but it was at this point that I broke down. I had been praying the whole time, but I had a serious talk with God.

My friend is a mom of two wonderful kids. They need her. She does so much for other people and she has so much living left to do. I prayed that God would not take her so soon. It was not her time.

I’m not going to sugar coat it. I needed two Xanax to calm down and sleep. It wasn’t pretty and I knew I’d be up all night. She said the surgery would be about 4-5 hours. So I slept.

The first thing I saw when I checked my phone was a picture of her stomach. She said the surgery was a success and the kidney was chugging along and working great. Relief! Happiness! I can’t even find the right words. There was my friend with her miracle.

It sounds silly after just saying I had a mini breakdown and needed Xanax, but deep down I knew she’d be okay. She was in great hands. I think it was the sheer magnitude of what was going on more so than the fear that she wouldn’t survive. I mean, of course there is always that fear as well, but I just wasn’t thinking that.

I spent so long praying that she’d get this miracle and when it finally happened and she was going in, I think every emotion hit me at once. So this blog isn’t about me today. It’s about my friend and it’s about God.

I may not be an every Sunday church-goer but I do pray. I talk to God, good or bad about how things are. I don’t think you need to go into a church to have a relationship with God, but I do believe he listens. He heard my prayers, and the prayers of many others last night and my friend has a second chance at life.

She is not out of the woods. She still needs prayers that her body doesn’t reject the new kidney and that she heals well, etc. But I have faith that she will be fine. It’s funny, someone can move¬†many states away and you can just chat online all the time, but they can still mean so much to you. I hope she knows how much her friendship means to me.

 

 

 

 

Dusting off the Blog

12493962_10208541118866845_3900771044366152179_o

I haven’t written a blog post in over a year. I think I lost my mojo for getting it done and it was hard finding things to talk about to keep it interesting. I thought about it and why does it have to be interesting? I’m not all that impressive! I’m just me. So this is just my blog.

So what’s happened over the past year…too much to recap. My kids seem to have aged so much. It’s going by too fast. It sounds so cliche. Everyone tells you to slow down and enjoy it, but when you are a freakin taxi driver taking kids to ballet, gymnastics, wrestling, baseball, etc., it’s hard to slow down.

My house is never perfect. I’m hardly ever organized, but I’m somehow holding it all together. Last year around this time I decided I was having a mid-life crisis. I was turning 43 last March and that was the age I had been dreading since I was a kid. My mom passed away from ovarian cancer than I was 14 and she was 43. I had always thought I, too, would die at 43.

Between my fear of dying and leaving my kids motherless, and realizing just how young my mother really was when she battled cancer and died, I was having a really tough time. I didn’t want anything to do with my birthday so instead I put all my energy into getting a puppy. For anyone who has read my previously, you know I already have a zoo with a dog, three cats, and a parrot, but since I was a little girl I’ve always wanted a German Shepherd.

For weeks, my life was searching rescue sites for the perfect puppy. It took over my life, which I think was what I needed at the time. We brought Dunkin home on March 26th of last year and my birthday is March 30th. It made my birthday less about me and more about enjoying the puppy.

My rheumatoid arthritis is still a pain in the ass among other places. Last winter was much more difficult than this winter. We’ve honestly had a fairly warm winter. And it doesn’t hurt that we were in Florida last week when it was -10 here and we missed that completely.

I felt like I wanted to write a blog tonight because people annoy me with they dumb comments! I don’t know why people say the dumbest things. I’d like to answer with sarcasm: Yes, I have RA because I don’t take care of myself. Yep, it feels JUST like the arthritis you have in your knee from playing tennis. No, I haven’t thought about trying Alleve! I’ll have to give that a try. Your mother’s cousin’s friend tried an herbal supplement that cured her of RA, oh yes please get me that info right away!

I’m back on Plaquenil and I am better on it than off. I tried Cymbalta for chronic pain and that did not go well at all. I was hell! All I did was scream at my kids. I also had even worse mood swings coming off of it. Needless to say, it was not the drug for me. It my help a lot of people with pain management, but the mood side effects for me were horrendous. I was angry…like really angry all the time.

Two weeks ago I tried the trigger point injections again because my rheumatologist talked me into it. Last time around it cause a multi-day migraine. I think it hit something, but what do I know. This time around I had no reaction and until today I haven’t had a headache. Today’s migraine was pretty intense, but between the Excedrin (my prescription meds are out) and the muscle relaxer I was able to get rid of it enough to function.

I was offered my old job back, kind of. I was laid off in 2010 in a really hurtful turn of events that just didn’t need to be handled in that manner. Fast forward 5 years and the company has gone under and new owners have resurrected it and they reached out to see if I’d be interested in producing the annual directories that I used to do. I’m not sure what the hell I was thinking when I accepted their timeline, but somehow I got it done (with help from some wonderful friends who wanted the work and did a great job).

They want to meet with me again this coming Friday to discuss doing them again for this year with a longer timeline, so that’s a good thing. As a freelancer, steady income is a plus. I work as an advocate but I work for a nonprofit. I’m never getting rich that way…heck I’m lucky if I can buy groceries for the month with that, but I love it and I love the families I get to work with…95% of them. I can’t vent about the other 5% but trust me when I say there are some stories there!!

Anyway, I intend to start venting more often because it’s healthy for me. There are far too many irritating people in the world and I just can’t keep it all in!

 

Working Out and Feeling Bad

back

Usually I feel good after a workout, but I started working out harder yesterday and today. I’m paying for it now. I used heavier weights than usual, and my trapezius muscles are as tight as a drum and I feel a headache coming on. I’ve had a long few weeks. Work has been very busy. I have to honestly say that I love my job. Being able to help families of children with special needs is a blessing. I find that I get as much out of it as they do.

There’s just something about winning a war with a school district that doesn’t want to give a child appropriate services that makes me feel so good. It doesn’t always work out that way. I had a PPT end very badly two weeks ago with the school stating that autism was a medical diagnosis and was not impacting the child’s ability at school. But this week I had a mom who has really been put through the wringer.

I am happy to say we left that PPT happier than I expected. When things like that happen, it makes me feel that I’m truly making a difference for these kids. It’s also a good break from my own life and my chronic illnesses.

I’m in a lot of pain tonight. Some of it is from my workout. That’s the good pain. The rest is my fibromyalgia and rheumatoid arthritis…that is bad pain. My sacro-illiac joint is so painful right now I could scream. I took some Alleve and I’m hoping it helps. I also have one of those heat patches on my neck/shoulders to try and loosen them up.

I’ve also been having the strangest pain in my inner thigh. Of course my mind jumps straight to blood clot, though I’m sure it’s no big deal. I just feel like I’m falling apart. I look the worst I’ve ever looked and it’s depressing. I have the puppy, who encourages me to walk more, but when we did our long walk with the hills, my back, hip, and feet took two days to recover. Here’s the problem…everyone is saying that if I do it more often it won’t hurt as much. But is that really true?

I have worked out several days in a row and then my pain gets worse, not better. My body needs time to recover. So I am doing my Beachbody videos and walking, but I’m alternating the videos so as not to work out in the same way each day. I’m also going to try and do a little more yoga for my SI joint. Stretching is the only thing that helps, though it’s terribly painful.

The bright spot in my week is my puppy. Oh my goodness, he’s adorable. We had our first socialization class tonight and let’s just say he’s social. He was romping around trying to play with the other puppies and then he and one other lab puppy really seemed to enjoy playing together. I’m trying to be conscious of training with this guy, because our other dog really hates men and barks a lot at people. My kids were so young when we got here, I didn’t have the time for socialization like this…and I hadn’t done a whole hell of a lot of reading on it.

She’s not a bad dog, but she does have some issues. My little guy was one of the youngest in the class and the biggest puppy there. I don’t think I realized how big he was until I saw him playing with a black lab that was a week older than him. His feet looked so huge compared to hers.

I have the kids home all week next week for spring break. I’m trying to plan a few things so I’m not going nuts. I still have to work on Wednesday and Friday and my daughter is having a re-do of her birthday sleep over this Sunday. I need to get some rest before that, but luckily the quietest of the girls are able to come. The two wild ones are away for spring break…darn.

I’m hoping that tomorrow is a better day in terms of pain level. it’s so bad i didn’t even know which part to use the heat patch on. My wrist is also terrible. I feel like I’m 90 years old. I will stick to an easy walk tomorrow if it’s not raining. I’m sure the cold and rain aren’t helping things. Still waiting for spring to arrive. At this rate I’ll be using my heated blanket until July.

It’s a Full On Flare

sleepy-kitten-cute-kittens-9835304-450-301

I went to bed with a stiff lower back and woke up with it, too. The problem is it got worse and worse as the day went on. I was at a tutoring session with my client who has autism and my feet were throbbing and my hands were in so much pain.

By the time I got home, I was so exhausted that I fell asleep on the couch while my kids amused themselves and took care of the pup. By 6pm my feet were so swollen I retired to the couch where I have been planning my Easter meal ever since. I’m having all of my in-laws over. There were years where that would stress me out terribly, but sometime around 4 or 5 years ago, I stopped caring so much.

I’m not mean, in fact, I’d go out of my way to help any of them, but I don’t think they truly like me that much. We’re at least at a point where spending an afternoon together is no longer my personal hell. They were rough…to the point where my husband’s best friends told me I had the worst in-laws they had ever seen. Yay me!!

My husband has two sisters and he was the first to get married. Strike one was that I’m not Irish…not even a tiny bit Irish. And, I won’t even get into the whole wedding fiasco and aftermath. There was a time where my mother-in-law was very hurtful to me, whether she truly intended it or not. But, in the past few years we’ve done a lot (both of us) to get along. It’s a much nicer relationship.

One of my sister-in-laws drives me a bit over the edge. She relies on my 11-year-old son to watch her 4-year-old boys. They are very political…at least he is and she follows. I’m more of a liberal when it comes to social issues. I believe gay people should be able to get married, I’m pro-choice, I believe in gun control, though I do appreciate the second amendment.

Living 5 minutes away from Sandy Hook school and the horrific mass shooting that occurred there, I have strong believes that high number magazine clips should be banned, as well as those types of assault weapons. If you are a hunter and you need those, you need to find another sport. I don’t have issues with people who own guns. I have friends and family that are very responsible gun owners and that is their right. I just wish that there were stricter guidelines and background checks.

Anyway, I never want to be political on this blog and I hope those of you who disagree with my views don’t stop reading. I never preach! I accept that all people have their own views. The problem I have is that my in-laws are so far to the right that they can’t see past themselves. You can’t have a conversation with people who don’t listen, so I always pray we can stay away from anything political.

I can already tell tomorrow is going to be rough for me. My house isn’t in horrible shape, but I need to clean and start cooking. It’s difficult to admit that those regular things take their toll. I’m already having a tough time with the fact that my long walk with the big hills last night maybe¬† contributing to my pain level.

I just feel like it’s a rheumatoid arthritis or fibromyalgia flare. I have the pain and the exhaustion. I almost fell asleep working with my client this morning. My sleep has been interrupted a bit with the new puppy. He has done really well the past two nights and went to bed at 11pm and slept until 5AM. The disrupted sleep isn’t helping. That in itself is tough when you have an autoimmune disease!

So I’ll leave you with my latest symptom. I didn’t give it much thought until it started happening more frequently. I keep waking up with what looks like lipstick stains on my hand. The red marks don’t wash off and they stay for several hours. It’s not always the same spot. I have to say, I didn’t give it a lot of thought until my husband expressed concern and I put the pics on Facebook and everyone is telling me to go to the doctor.

I’m just wondering if anyone else has this happen. If anyone knows what this is, I’d love to know! Could it be related to my Raynaud’s?

IMG_3519 IMG_3523 IMG_3531

Happy Easter/Passover my autoimmune friends. I hope you’re evening has less pain than mine!

Previous Older Entries

Follow

Get every new post delivered to your Inbox.

Join 1,056 other followers