Losing Weight with an Autoimmune Disease

Losing weight is hard enough. Ask anyone who has more than a few pounds to lose. It’s not easy. But when you add an autoimmune disease (or two) into the mix, it makes things even more difficult. I have rheumatoid arthritis and fibromyalgia. I have spent the last two years trying to live my life without putting as much focus on it.

It’s not that I don’t have pain. I do. I have horrific migraines with my fibro trigger points. My fingers and toes are often extremely painful from the RA, as are my neck, hips, back and one knee. But in June I saw a photo of myself and decided this was it. I needed to take charge and do something to take back control of my weight.

I’m SURE the meds factor into my weight, but I’m also sure that the cookies aren’t helping. There is more I can do to help. So I started with 30 minutes of yoga a night. I tried a free 2 weeks of Noom and I went to Target to buy a scale. That may have been the most difficult part. The Noom app wants you to weigh yourself every day and U was truly afraid to step on the scale. And then the next morning I did it. It was awful. It was depressing, but it was also a starting point.

I began logging what I ate, which was something I had tried before and never lasted more than a few days, but I was determined that this time would be different. I was encouraged when in the first week the scale was going down. Okay, it wasn’t by leaps and bounds, but it was going down. And then it stopped. The scale didn’t move for about 5-6 weeks. I was frustrated and ready to give up so I increased my workouts, doing a barre class each day and trying to cut out sweets as much as possible. Just because I was staying within my calories didn’t mean I was eating right.

So I finally got the scale to move and I’ve been feeling encouraged, but do you know what else I’m feeling? Pain. My big toes are in terrible pain. My SI joints feel locked up and I have very little movement and my right hip is in unbearable pain. I don’t know what the right step is. Do I stop and rest? Or do I keep going with lighter workouts? I chose the latter. I’m still doing my online classes but I’m not doing the super hard ones and I’m using modifications. I’m working on being okay with that.

It’s just so hard to have limitations. I never had limitations. I had a strong body and I feel myself getting stronger, but at the same time I know I’m pushing myself and I will soon need to rest. Did I mention it sucks having an autoimmune disease? Finding a balance of activity and rest is no easy task. I’m still figuring it out.

So the Diet…

I had my checkup today. There is good news and bad. The good news is that my bloodwork came back decent this time around. A few months ago my kidney function was off and it had me stressed out, but that was back to normal. My doctor reminded me that I really need to be diligent about drinking my water.

The bad news…I did 6 weeks of food coaching and I’m fatter. I thought I lost weight. I’m in a smaller size of jeans! So I was mildly devastated. I know this past week has not been my best. I ate rice pudding twice at the hospital. I had a scone and a blueberry muffin. I had pizza. We were eating out of the hospital cafeteria and I could have made better choices.

I definitely have not made time to exercise and quite honestly, making time for my kids and sleep are higher on the list right now. I need to try and get back on track despite everything that’s going on.

Then there is the RA piece. At my physical this afternoon, I told my doctor that my RA has really been okay. Now a few hours later my hips are killing me. They are really stiff. I haven’t had this in a long time. I’m sure the stress is adding to it, but I’m going to see how it is tomorrow before I take an Alleve.

Who knew at 47 I’d have all these health issues. My health coach wanted me to start thinking more positively, or even less negatively. She said I don’t have to lie to myself, but I need to stop being mean to myself, too. I am disappointed that I didn’t lose weight, but I’ll start from here and I think I need to weigh myself daily. I hate seeing the number, but maybe it will keep me from gaining more. Maybe I’ll think twice before eating something delicious HAHA.

And…my German Shepherd ate a half a tray of lasagna tonight so I don’t have to worry about finishing that. I love him, but he is a jackass today.

Taking Care of Everyone But Yourself

We all do it. I think it’s a mom thing. We make sure everyone we love is taken care of. We are there to support other people. But, somewhere in the midst of caring for everyone else, we often forget to take care of ourselves.

I’m realizing I’m at that point right now, but that doesn’t mean I know how to change it. As I mentioned in my previous post, my step-mother is dying. I’ve spent most of the last week at the hospital with my dad. I worry that he might not hear something the nurse or doctor says. I worry that he’s not eating enough. And, I worry that his world is crumbling around him and there is absolutely nothing I can do to stop it.

Then there are my kids. My son talked to me tonight completely not understanding the fact that if the cancer is at a point where it’s too bad, it’s not worth it to continue treatment and we will just help her be comfortable. He said that’s like we are choosing to have her die. He just can’t see the part that the cancer is killing her no matter what we try to do to slow it down.

My son is 15. He’s a typical teen. He can be a real jackass sometimes when I have to yell at him to get off the Xbox or clean his room. But, he is so full of heart. He cares so deeply for my dad and step-mother. He sees them more than any of the other grandchildren because he’ll just go down and watch basketball and they take him golfing all the time.

My girls are aware of what’s going on. My older daughter asks a lot. I think my younger daughter is in denial and afraid to ask.

So, as a family, we are going to the oncologist’s office to talk on Friday. I get the sense that my dad would rather that the doctor explains everything, which means it’s bad. So in the midst of making a lasagna as soon as I got home so I can make sure my dad is eating, and trying to talk my son through his feelings, I’m exhausted. I’m emotionally drained, but I have to keep going. Somehow we find strength when we need to.

My plan for right now is a Xanax so I can help shut down my thoughts tonight and get some rest. I miss my pets. I miss my kids. But right now, my dad needs me and I’m not sure he’s ever needed me in his life. He’s never asked for help. That’s what makes this even more difficult.

I’m waiting for my rheumatoid arthritis to flare. There is only so much stress my body can take before it starts fighting itself for no reason. Autoimmune diseases are so odd that way. It’s like “ok, you’re going through a lot, it’s time to attack your joints and make it even more fun.”

I’ll keep reminding myself that I’ll get through it.

 

 

Where the Hell Is Spring?

It’s April 16th…and it’s sleeting. Last year during spring break it was 85 degrees. We had one nice day in the 70s and now we’re back to cold, windy…and SLEET! WTF! For anyone who has rheumatoid arthritis, you know this is the worst type of weather. The damp, cold. It’s awful. My hands and feet ache, my back is stiff and even my knee hurts, which is odd for me.

I need some warmth. We aren’t going anywhere for spring break and it’s not going to be a nice week, which translates to a week of my kids telling me they are bored in the house.

We’ll figured something out to do, but let’s face it…it’s not Aruba or the Dominican Republic.

I’m almost feeling depressed today. I’m in a bit of a funk and I know the weather had something to do with it, but I’m sick of not feeling good enough in several aspects of my life. I’m sure living with an autoimmune disease plays into it. No one sets out thinking hooray, I hope to get one of those! I hate that I have to slow down sometimes. I hate that I think I’m huge. I hate that sometimes I need a nap for seemingly no reason, but my body is crashing and I don’t have a choice.

It’s tough to explain to people. I end up feeling lazy if I need to lie down. There are always a million things I could be doing, but when it’s that kind of exhaustion just hits and I’ve found if I push through, I end up making it worse.

I keep telling myself I’ll cheer up with the sun and the warmth but to be honest, I am not sure that will happen. I’m scared it won’t. My kids are at a stage of life where they are super busy and I’m constantly on the go driving them to this activity or that. Don’t get me wrong, I wouldn’t have it any other way. I am already fearing for the day I don’t have anyone to drive around.

I guess I’ll allow the funk for a bit and then pick myself up. I don’t feel sorry for myself very often and I know I have things very good in comparison to many others. I have some days with no pain. They aren’t often, but they happen and for the most part my pain is manageable. I’m trying to count my blessings tonight as I’m watching my hands swell. This week has got to get have some bright moments. It just has to.

 

 

Stress and Autoimmune Flares

We’ve all heard about the link between stress and flare with autoimmune issues. I can personally attest to getting more frequent flares when I’m stressed, but how do you combat stress? I mean, we all have it. Life is messy. Many of us have families. Marriages are hard. Money issues. Family issues. Being stresses about your autoimmune issues… There is stress everywhere.

So how do you avoid it? I’ve made no secret that I’ve tried essential oils and I think I’ve found some relief in them. I won’t push one company over another, especially when I only diffuse them and like the scent. There are some really nice blends out there that just plain make me feel good.

There’s also a hot bath. Some people like exercise. I recently started walking 5-6 nights a week on a new paved walkway in our town that’s about 4 miles. In all honesty I wouldn’t go if I didn’t have a friend that I go with and keeps me on track. Some nights I don’t feel like it and I get the text saying “7pm?” and I feel the guilt. But, I also do feel somewhat better afterward.

The problem with exercise, as anyone with fibromyalgia or RA can tell you is it’s damn hard when you’re hurting. My first three days of walking were horrendous. I didn’t feel like I could make it back the first night, and when I got home I was walking like a 90 year old person. It wasn’t pretty.

It has gotten easier now that I’m almost 3 weeks in (and I haven’t lost a damn pound but that’s a whole other discussion). But, there are days when it’s really hard to talk myself into going when I’m sore from fibro or my joints are stiff or swollen from RA.

I had the fabulous idea to race my 10 year old one evening and about 20 strides in I felt a stabbing pain in my hip so bad that I thought I was going to fall on the ground. I’m not even sure what happened but that took almost a month to feel better. It sucks to realize I can’t do stupid things like run with my daughter without completely hurting myself, but I’m managing to walk.

My other remedy is one that people in my life don’t approve of…Xanax. But since last summer I’ve suffered from terrible anxiety. I don’t always know why it hits or if it’s something in particular that brings it on. I mean, I’m sure it’s stress, but there isn’t always a specific reason. I’m not embarrassed to say I need to use Xanax to help when it gets bad.

If anyone can figure out how to be completely less free so they can have less flares, can they clue me in on their secret? I have yet to figure it out even with everything I’m currently trying.

 

Blogging Is Hard

 

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.

Motherhood: The Perpetual State of PMS

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…

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.

 

 

 

 

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!!