Tomorrow Will Suck

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I’m trying to be positive about the breast biopsy I need to have tomorrow. I really am. For the most part I’ve stayed off the Internet, other than to diagnose myself with Stage 0 pre-cancer, which for me, is very positive. I’m usually jumping to death very quickly.

But at the moment it’s the procedure itself that’s scaring the crap out of me. It’s called a stereotactic biopsy where they can do a mammogram guided biopsy. It sounds dreadful. Picture a padded table where you  lay face down with your boob in a hole. Then the boob is squeezed and the table is lifted. Honestly it all sounds like something from 50 Shades of Grey.

Then someone else told me that while they do numb the area, when they take the tissue, it sounds like a loud gun and scares you. Awesome!

The office called this morning and the place I was going to now cannot do the procedure. The doctor that looked at my mammogram felt like I need this special machine because the suspicious area is so small. That’s a good thing. Small is good. They changed the appointment to a different nearby hospital that apparently have this new piece of equipment.

I need to get through tomorrow and then that’s step one. I spoke to a friend today who had her first biopsy come back normal and a second one come back stage 0. She had a lumpectomy and now they just watch her closely. They did want her to go on a drug called tamoxifen. That scares me because it affects your hormones.

Every drug I’ve ever tried that impacts hormones has been hell, including the pill. I’m not on a very low dose pill, but I have horrific migraines on my week off the pill with the hormone drop. Nothing about adding a new medicine into my already full group of RA meds sounds like fun.

The good news about the appointment change is that it is now at 8:30AM vs 1pm. I have no time to stress about it before we leave. I’m not a morning person so it’s basically wake up, shower, and go.

I’m taking for positive thoughts for tomorrow. Being afraid of the unknown sucks.

 

 

The Appointment No One Wants

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If you’ve read my blog you might remember that I had genetic testing to see if I carried the gene for breast and ovarian cancer. Luckily I am not a carrier, which was a huge relief. I have long been afraid I’d die young like my mother did from ovarian cancer and I’d leave my kids without a mom.

Fast forward to last week when my breast hurt. I felt a little something but I also have my period so I figured it was likely cysts that come and go with cycles. I called and scheduled the appointment for a mammogram because I was 3 months overdue and my doctor also wanted to see me.

At the exam, she said it did not feel like anything scary, but more glandular. So I felt pretty okay about the whole thing…until this morning. I had my mammogram and ultrasound and they had me sit to have the radiologist look at it to see if they needed more pictures. They then took me back in for another mammogram and another ultrasound. Anyone who has had this kind of testing knows that isn’t good.

The radiologist did my ultrasound herself and said I had a few normal looking cysts but that there was an area of tissue on the mammogram that looked a little different from the rest of the tissue. She said they wanted me to have a biopsy but that they couldn’t do it at the office because the area was so tiny, they need to do it with a mammogram to get the right spot.

They asked me to wait outside the office for the scheduling secretary and I was still okay, until she came out and said my doctor always likes to see the report and choose where her patients go for further testing, but she wanted me to know that even if it was “something” it was so small and they caught it very early.

It wasn’t until that moment when she said “something” and “caught it early” that it hit me that omg she thought it could be cancer. I couldn’t stop a bit of waterworks, but it wasn’t too messy.

I now have a biopsy scheduled for Friday and then a few days of waiting before I know anything more. If nothing else, this blog tonight is to remind you to get a mammogram. I would not have gone today if I hadn’t had some pain and felt a tiny lump (the cyst).

I hate being in limbo with anything. I feel like I can handle things if I have a plan and right now there is no plan because I don’t know if it’s cancer or some weird tissue that looked different. Obviously, we’re hoping for the latter.

I won’t tell my kids until I have that answer, mostly because my son is turning 14 this year and is very scared that I’m going to die because my mom died when I was 14. The last thing I need is his mind wandering.

I’d appreciate it if you can keep me in your prayers and hopefully I won’t need to blog out a cancer journey, but if necessary, I’ll do what I need to do. Tomorrow’s blog will be much more uplifting. I will not be discussing any of our other summer hellish experiences for at least another day or two. My dog is in a cast. My daughter had staples in her head. But…we’re still kicking…well, except the dog. He’s not kicking anything while he’s in the cast.

 

 

Trigger Point Pain

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Trigger Point Chart

If you have fibromyalgia, you’ve heard the term trigger point. Trigger points are the 18 spots on your body that are painful when pressed. I look at the chart of where they are and I have tenderness in most of those areas, but the top of my trapezius muscles (located on the upper back where the shoulder meets the neck) get so tight that it brings on a migraine.

Actually when I read about it online, they often call them tension headaches when they start with knotted muscles. It’s like the chicken and the egg. Do the knots start the migraine or does the migraine cause the knots? I just don’t have that answer, but what I do know is, the top of my right shoulder all the up to the base of my skull on the right side is so tight and I can’t get much relief from anything I’ve tried.

I took a muscle relaxer an hour ago and some Alleve a few hours before that. I tried a hot bath and light stretching, but I’m still here unable to see out of my right eye from the pain. This is blogging dedication, my friends. Tonight I’m blogging with one eye open.

I have one of those portable tens units. First I bought one at Target and I found it to be very helpful in loosening the tight muscle but also relieving some of the pain. I have since upgraded to a model with much more oomph! I only need to turn it on low to have an impact.

The unit runs for 30 minute sessions and has a bunch of different settings. I’ve had it going on different settings for 4 consecutive sessions. My neck is still tight, but the vibrations from the unit are enough to mask the pain quite a bit and ultimately my muscles do loosen up from it.

I’m not sure if I’m supposed to use it for this length of time, but right now, it’s the only thing helping and I can’t see what harm it can do.

People who don’t get migraines have no idea how bad they can be. I love the people that ask if I’ve tried Advil or Alleve for relief. I do use those but they barely take the edge off.

Lately I feel like my headaches are more frequent and I’m not sure if it’s the weather pattern, hormones, stress, or something else, but it’s hell. I have my peppermint essential oil (yes, people still mock me for using those, but if it helps even a little, with a headache this bad, you try it).

It sounds weird but having a migraine is a very lonely feeling on top of painful. I feel very isolated from the people I love or from doing things I enjoy. There’s no easy way to explain to your kids how bad a migraine is. I remember when I was a child, my best friend’s mom used to get migraines. When we’d sing and get loud she’d yell, “I have a migraine” and I  thought she was just trying to shut us up. Little did I know how much we were probably annoying her and making her headache far worse.

Tonight I’m frustrated with my headache because it’s not going away. Today is day 2 and I just want to go to sleep and wake up headache free. I’ll say a little prayer, but I’m not getting my hopes up.

Until tomorrow…

 

Irrational Fear

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I don’t know whether it’s listening to all the news stories or terrorism, hate, and violence, but I’m becoming more and fearful of even normal things. I’m not sure it’s at the “I need a psychiatrist STAT” mode, but it’s enough that I check in with my kids a lot, I look around nervously when we’re in a crowd, and I lie in bed at need creating terrible scenarios in my head.

I guess I’m wondering how many people are dealing with similar issues. I don’t think I’m alone. These are scary times. I don’t want to get into a political debate but the current turmoil in our country is not helping.

If you take one look at Facebook you’ll scroll past people bashing President Trump followed by people saying horrendous things about “Libtards.” I’m wondering where we want wrong that the two sides are so far apart that we don’t even listen anymore.

I’m of the believe that 15% of the people on each side are extreme and the other 70% of us fall somewhere in the middle. While we may not agree or like Trump, we’re not pretending he isn’t president. Or while we may have strong beliefs about abortion, that doesn’t mean we can’t find common ground on other issues.

I don’t know about you, but I’m not seeing any of that at all. There’s not much in between, even at a local level. I have previously discussed the nightmare of politics in my small town. I won’t rehash it all as it’s been two years but when I attended a meeting this past week and realized things haven’t changed all that much.If thing scan’t change in a small town with so many people working for the betterment of schools and the community, how can we do it on a larger scale in the country?

But it’s not just politics that are causing my fear. I’ll be driving down the road and fear one of my cats got out and eaten by a bobcat. Or I get a strong feeling on our boat that it’s going to crash.

At the moment, I’m not stopping myself from doing things, but I’m also pretty okay staying home if I don’t need to go anywhere. I guess one could say these are irrational fears, but then I start to think, are they? There are people murdered every day. There is human trafficking, kidnapping, and so many other horrifying things going on and I’m here in my bubble.

I know enough psychology to know that my fears stem from losing people I love early in life and then again when I was a grown up. I’m afraid that something will happen to my kids and I won’t be there to protect them. How do you balance letting them grow up and holding on for dear life.

My kids are my everything. They are three very different little (not so little) human beings. My son is starting high school and I keep thinking I only have 4 more years with him at home. I’m NOT ready!

I’m not going to be a good empty-nester. I’ll be one of those women with 30 cats an a few dogs. I need to mother something! In the meantime, I need to find a way to push back the irrational (or even rational) fears standing in my way. I’m not afraid to say I’m scared. I just need to figure out some sort of plan of action (other than Xanax) when I’m a mess.

I’ll work on that. If you have better ideas, I’m happy to hear them!

Politics: Tearing Relationships Apart

 

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It’s no secret that this country is the most divided it’s been in my lifetime. Frankly, I’m not sure how we’re going to fix that and I’m the first to admit, I have no ideas.

I’m a middle of the road kind of person. My social views are liberal so if the fact that I’m pro-choice, pro-gay marriage, pro- some kind of stronger background checks for guns, then I will understand if you want to stop reading. The difference I’m finding is, I have a deep respect for pro-life people. I see their side and do see where they are coming from. I don’t think a woman ever enters that decision easily.

I have two daughters and perhaps that has crafted out my view on the subject. If my daughter was raped and didn’t  Is want to have that baby, I would respect her decision and stand by her. If she chose to have the baby, I’d stand by her and help her in any way. Why? Because I love my daughter and I want her to make the best decision for her.

But I don’t think we’re really arguing about abortion and gun control at this point. I mean, those issues are on the table, but they aren’t the great divide. I think the great divide comes from not being able to listen to each other’s opinions.

I just had a rather large argument with my husband over the president’s decision to exclude some media outlets from his press conference. To me, that goes against everything America stands for. When we take away Freedom of the Press and the right to criticize the government, we start to move toward a scary path of dictatorship where we are told what news we can watch.

I don’t like that. My husband’s point was that Trump kicked them out because they aren’t reporting the truth. Is there media bias? Of course there is. But did Fox have anti-Obama stuff going on a loop over and over all day…yep! And that is their right to do. I wish we were back in a time where a reporter’s job was to report the news and not put their spin on it, but we’re not there.

In some ways it’s good that people have become passionate about what is going on in their country and some have learned how to contact senators, etc. But how do we get to a point where there is a compromise and we can work together?

I don’t think this current president will get us there. Whether he intended to or not, he incited a feeling that it was okay to want people of different race and religion out of the country. It gave white supremacists that had probably otherwise held their meetings in secret, a platform that it was not okay to speak.

In the next town over from where we live a Swastika was painted on a family’s house. While we  are Catholic (yeah, I’m a pro-choice Catholic, that’s between God and I), this incident bothered me a great deal. A friend of mine told me a story of when she was a little girl and the morning of Halloween she woke up to a Swastika painted on her door. She said it was the first time in her life she was afraid because of who she was and even embarrassed.

The newspaper did not release the name of the family but many in our community wanted to surround them with kindness and know that it’s a very few that that kind of hate. I do believe there is far more kindness than hate in the world.

Another issue I tried to bring up with my husband was President Trump’s decision to repeal something Obama put in place where people who were not able to take care of their own finances (another person had their financial guardianship because they were not capable of doing it) could now purchase guns again.

I think I mentioned before that we live minutes from Sandy Hook. My friend lost her daughter that day and my niece lost 11 friends. I don’t want to take guns away from responsible gun owners, but if a person isn’t capable of taking care of themselves how is it okay for them to own a firearm?

This is one issue my husband and I agree on. We actually both feel HIPAA should be thrown out the window if a person owning a firearm is admitting to a psychiatric facility, we think there should be a red flag if they are a gun owner. You can agree or not agree, but we have one side blaming guns and one side blaming mental health. We need to address both.

So what now… other than I’m sleeping in my daughter’s room while she’s at a sleepover and I’m too mad at my husband to talk to him. Do you think we can get back together as a country or are the conservatives and liberals so far apart at this point that it’s not going to happen?

One thing I really hate is seeing posts that start with “You stupid liberals…” as if all people with liberal views feel exactly the same on every issue. Have you ever met anyone that you agreed with on every single issue? I haven’t, but maybe that’s because I’m crabby and don’t like many people 😉

The hate between the two sides needs to subside before a real change can be made. If I had a clue how to make that happen I’d suggest it, but I don’t. I will say Trump supporters posting Anti-Muslim videos and Democrats posting anti-Trump everything isn’t helping. Kellyanne Conway…also not helping. Hello?? We’re concerned abut fake news and yet you have that woman go on the news shows and make shit up? Not helping.

The American people want the truth. They wanted an Education Secretary that has a clue about education. As someone who works as an advocate for children with special needs, Betsy DeVos frightens me. She has the potential to do a lot of damage. I think, in my eyes, if Trump had some cabinet choices that appealed to a wider range of people maybe it would be easier to come together. But hey, she donated a hell of a lot of money to the Republican party so who gives a shit that she knows nothing about public education?

I’d feel better about the president if he chose someone qualified.

I don’t know where we go from here, but it’s not getting better any time soon. Oh sure, my husband and I will talk at some point tomorrow when he stops being an ass and realizes that other people can have different opinions…but when is the rest of country going to catch n to that?

 

 

 

 

Blogging Is Hard

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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 3–5 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.

Explaining Things to Kids…

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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 missing 😦

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.

 

 

 

 

God Is Good

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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.

 

 

 

 

Another Tough Week with a Happy Ending

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Overall this has not been a great week for me. I’ve had horrific migraines, to the point where I had to pull over with my kids in the car because my vision was to blurry to drive. My stupid insurance only covers 4 generic pills (Maxalt) per month. It’s the only thing that truly helps me, and I used all four this week.

I have a feeling part of it is that they changed my birth control pill and my hormones are all over the place, but there was one point Tuesday night where I thought my head was going to explode.

In all honesty, it was a very stressful week for me. As I mentioned, we were adopting a puppy. I had asked and asked for an updated picture and when I finally got one on Sunday night, the dog looked nothing like I thought. I agonized over this. The point of me getting my midlife crisis dog was fulfill the lifelong dream of having a German Shepherd. Now I went through hell to rescue and he wasn’t a shepherd.

I sat the kids down to talk and no one was on the same page as me, as expected. They had their heart set on him. But the next day they agreed to look at pictures of German Shepherd puppies that were available this week. We all agreed that I needed to contact the rescue, allow them to keep the money as a donation, and get the dog I was dreaming about.

.I shed a lot of tears figuring out what was the best decision, and I’m sure that didn’t help my migraines. When it came down to it, the whole dream of getting one was out the window if I took a dog that really wasn’t what I wanted. But then I struggled with being a horrible person who agreed to rescue and changed her mind.

I’ve never bought a pup without meeting it, and ultimately I felt meeting a dog first was so important. So…we found pups in Pennsylvania that were 8 weeks old and ready to go to homes. We drove 4 hours one way…did I mention I have three kids?

When we” got to the farm house, my kids asked what this cart was in the yard and I had to explain before we got out of the car that they apparently were an Amish family. I hoped our little talk would help keep the comments to a minimum, but my son doesn’t always take social cues so well. The first thing he said when he saw the woman with her hair in a cap and the man with the long beard was: “Why are they dressed like that?”

Anyway, we met 9 puppies that all looked alike and it was no easy decision, but I watched one little guy go up to each of my kids and play so I chose him as our new baby. Even after 8+ hours in the car (with the last 4 in constant dispute over who was going to hold the puppy), I can tell you we made the right decision for us. He’s a lovey and I’m saying that at 2AM after he just woke me up to go outside.

He is not a big fan of his crate. He lived in a barn with cows and had never even been inside the house. I worried how my pets would react, but so far they’ve all amazed me. Our dog didn’t seem upset or dominant and the cats have slowly been checking him out. He should totally be back in the crate right now, but he’s asleep on my lap.

I love him and he was worth the week of hell. I feel like complete crap right now. My hands are swollen. My body is completely stiff from the car ride, but somehow I know it is all the way it was supposed to be. I mean, look at his picture. How could you not love him?

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