Confessions of a Stay At Home Mom

It's Monday. The Monday after daylight savings has sprung forward. Not that I could even tell. My 10 month old son doesn't sleep well, so neither do I. I knew that motherhood was going to be hard. Everyone had told me as much and I believed them. I just wasn't prepared for how hard. I wanted a baby so bad and I was going to be the perfect mom and love every minute of it. I had struggled too long to let fussy days and sleepless nights bother me.  

I was stupid. Living in a naïve dream land.  There are days, like today, when it's all too much. The fibromyalgia putting my body through hell, the four dogs that always seem to bark every single time the baby falls asleep for a nap; waking him, the endless list of chores I will never accomplish, and the ridiculous expectations (both of myself and of others) that I will never live up to. I can't work a “normal" job because I am too unreliable so I am a stay at home mom. I am the chick you ignore or make fun of as you scroll through facebook because she sells for a direct sales company. I am the one you judge for always missing social events.  

Today, I hate being me. Today, I hate being a sahm. Today, I just can't take it anymore. I am a failure and I am broken. My body has betrayed me and the constant pain has wore me down. I tell the dogs I am going to get rid of them if they bark again although I never would. I plead with my son, as we both cry in the floor, to just let go of me long enough so that I can put on some pants and maybe go to the bathroom. He doesn't listen. I place him in his crib and walk away as he screams bloody murder and sobs uncontrollably. I put on some pants. Not real ones, but more pjs. Real clothes are rarely worn. I go to the bathroom. My son is still wailing and I think how much of a horrible mother I am. I look in the mirror at my dark circles and a face I barely recognize and completely lose my composure. I am a horrible mother and I do not deserve him. 

I take my son in my arms as we both cry. When he realizes that I have tears streaming down my face, he stops crying. He looks at me with suck intention, puts his tiny hand to me cheek, and smiles. Then he hugs me. In this moment I am overcome with admiration and love for my son. Nothing else matters in that sweet little window of time. Not the bills that are piling up or the mountains of dishes and laundry left undone. Not anything, but those sweet little arms around my neck.  

I have no idea how I am going to do this. How am I suppose to handle the illness, the baby, the dogs, the husband, the bills, the housework? I am not that strong. All I know is that I will. And so we play. 

9-15-16 Update

I haven’t given a health update in a while so I figured I’d catch you up! I never published an update like I promised from the last appointment with my pain specialist I talked about. Well, it turns out I saw the assistant, who couldn’t give me a referral, but gave me a new medication and told me to come back in a few weeks. The new medication made me high as a kite! My pain wasn’t controlled at all, but I was just too messed up to care. Needless to say that was not an acceptable fix.  In the mean time I got a recommendation for a Rheumatologist and I made an appointment for a month later. When I went back for my follow up at the pain specialist I told her that the pills were too strong and I couldn’t live like that. Her solution was to offer me morphine. WTF? Morphine? Really? I think I literally laughed out loud. I asked if she could just up the dose on my patch and give me some tramadol until I went to see the Rheumatologist. She still had no idea what was wrong with me and literally said “Hopefully it’ll just go away.” I’m pretty sure that was my LAST visit with her. She was more interested in being my drug dealer than being a responsible doctor.  

Last Wednesday I went with my mom to see the new Rheumatologist. We didn’t have to wait hardly at all before seeing the doctor and she actually sat there and talked to us about my symptoms and my complete medical history for 2 whole hours! I used to take Prozac to help with my OCD and anxiety, but my OB-GYN took me off of it when my husband and I started trying for a baby. About a year later is when my symptoms started. It turns out, my Dr. thinks that the Prozac could have been controlling my fibromyalgia without me ever knowing I had it. There is still a possibility of Lupus, Psoriatic Arthritis, or a few more things I can’t remember; so after our discussion she did her exam and sent me for bloodwork and x-rays. She also wrote me a prescription for Prozac to see if that helps control my symptoms. I go back to see her at the beginning of November. I left her office feeling of hope for the first time in a long time. She really seemed to care and determined to help me.

Well, it’s been a week and I can already feel a difference. My pain levels are lower and there have been a few days where I haven’t even had to take a pain pill! That is big news for me! I even decided to come to San Antonio all week with my husband. He is here on business and while he works I am relaxing by the pool and catching up on my reading. It’s been amazing! I am starting to look forward to the future again.  

Let’s Get Real

Well, it’s been a long nine months. As my life has seemed to fall apart, you have made yourself more and more sparse. A bestie is supposed to be someone you can count on. She's supposed to be there for me whether it’s for a bad fight with my crazy mother, losing a loved one, or just having a rough time adjusting to my newly drab and lonely life. Where have you been? Why should it always be up to me to pick up the phone and call or send simple text?

I will not apologize for my illness. When I tell you that I can’t plan too far in advance, or I cancel our plans last minute, it’s not because I’m a flake. And even if I say no 99% of the time, I still want to be invited. I’m sorry if you are sick of it and think I am just full of excuses, but please try to understand that even though I have an illness you can’t literally see, it doesn’t mean it doesn’t exist. I’m still a human being and supposedly your friend.

Do you think it’s all in my head? Do you think I’m lazy or just want pity? Do you really think that I enjoy missing out on having a life? Constantly going to doctor after doctor, taking 9 pills a day, and wearing a pain patch that literally eats my skin. I got laid off from my work at home job so now I have to worry about trying to find a job that will accept my calling in all the time, being late, and lack of physical ability. Sound fun? Do you think that I enjoy the stress this puts on my marriage?

I don’t want your, or anyone else’s sympathy. I want understanding. And I want my best friend. So I can’t come out on a regular basis, why not bring a bottle of wine to me for an impromptu girls night? I mean, I’ve offered girls night plenty of times… doesn’t ever happen though. The only time we ever talk is if I call or text you. I am so lonely, but you wouldn’t know that, would you? You have officially disappeared from my life. Some best friend.

I’m so hurt and I miss you. Well, the you that used to care about me. We used to talk constantly. I never thought the day would come when my daily texts would not include you. I have no idea what is going on in your life anymore. Are you happy? How are the kids?”. I just assumed you would always be with me through this roller coaster of trying to figure out a diagnosis. I guess it’s obvious we aren’t bffs anymore and I have to accept that. It’s fine really, I understand. It is hard to have a bestie with “baggage”.

So I guess I’ll say goodbye now. I do still love you and I always will. I wish all the luck and happiness in the world. Thank you for the good times we had. I will always cherish those memories.

“Strangers can become best friends just as easy as best friends can become strangers.” - Unknown

Today I will choose happiness

I have really been slacking lately and I apologize. Sometimes life gets a little crazy and time gets away from me. All the sudden I look up and two whole weeks has passed! Hopefully I will get my act together over the next couple of days. 
I feel like I have been really uninspired and unmotivated as of late. I started the pain journal and I hated it. Who really wants to read all that depressing crap? Hell, I don't even want to write it! Sitting here tonight I realized I need to stop focusing on what is wrong with me and start focusing on what's right and the rest will follow. All of the negativity needs to be purged from my life. No one can do that for me and if I do nothing, then nothing will change. I have to make the decision each and every day, that no matter how I feel or what is thrown my way, today will be a good day. I will choose to be happy today. 
I think at some point or another we all get so caught up in the details of our lives that we forget to enjoy ourselves. Ourselves, our jobs, our kids, our spouses, and our God. We all need a reminder at times that we can't control the world, but we can control how we chose to react to it. And today, I choose happiness. 

July 25, 2016

Today is my appointment! This past weekend has been a roller-coaster of ups and downs. I would get a few good hours here and there where I could actually get up and move around, but then I would pay for it later. The pain has not only been in my head and jaw, but in my knees and especially in my hips and pelvic region. Even in my chest as I was on my way home from church yesterday. The numbness comes and goes as well, but is present in my feet and legs more often than not. I also have been enjoying the “bugs under the skin” issue again as well. I had been doing really well at battling my fatigue by getting healthy and I was even down to just ONE cup of coffee in the morning. Anyone who really knows me, knows that coffee is my crack. Unfortunately, since all of the other symptoms have become much worse, so has the exhaustion. I am not talking about feeling tired or worn out all day. I am talking about literally struggling to keep consciousness. My eyes feel heavy and droop closed at times, even during conversation. I have been getting splitting headaches the last three days as well. They aren’t migraines. I have suffered from those and they are much worse, but these headaches are killer none the less.

I feel like I have been living in a cloud as of late. It takes me 5-10 minutes just to write a simple text message I actually started this post last night, but couldn’t even remember how I had been feeling and my thoughts were all scrambled. When I opened it back up this morning I could barely make out what I wrote and I had to start over. I have been working on this one for about two hours. And thank God for spellcheck. It’s so frustrating. I feel like I am just dismissed when I tell people about my symptoms. Especially the “brain stuff”. I have always had blonde moments, just like everyone else, but this is different. I know myself. I had always enjoyed reading, at least two books a month. Now I can barely sit and read a chapter without getting confused and having to reread sentences over and over again. It is beyond frustrating and depressing.

I guess this is why I have been searching for God lately. I have harbored so much anger my whole life for the hell I have had to live through since I was just a baby, but now I am just tired. I don’t want to be angry anymore. I want to understand why. I need to give it all to God and hopefully he will show me the way.  

Well, I best be getting ready for my appointment and I will post an update this evening! Thank you all so much for your support and prayers. 

July 21, 2016 - UPDATE

***UPDATE***

What an eventful afternoon this has been! But let's pick up where I left off this morning. About 11 am I texted my mom and told her I was going downhill, "feels like I am headed back to where I was in January." So there I am, just working away and that pain in my jaw is getting more and more intense. I can barely even move it by 2:30 pm and I'm doing all I can to hold back the tears. My husband's chihuahua Leia has always been very intuitive when it comes to my health issues. Today I am in pain and she hasn't left my side. I'm trying to decide at this point if I should try calling my pain specialist back again. Not sure it would do much good... I have an appointment next month. Well, here's where it gets a little crazy.... all the sudden she (Leia) is in my face, licking me non stop. I keep trying to push her away, but she's insistent. That's when I feel it... or well don't feel it. I can barely feel her tongue anymore. I put my hands to my face. There is barely any sensation on the lower portion. At least on the outside; I can still feel the shooting pain throughout my jaw quite intensely. 

Alright, time to call the doctor. I called and asked to leave a message. I can feel the left side of my body getting "tingly" and Leia is very upset. I told the young woman I spoke with that I have an appointment next month, but I am having a full on relapse to how I was when I first came to see her, I have severe pain in my face, and my body is going numb again.... is there anything she suggests or can I at least take something stronger than an Advil. Asks me to hold. No problem. Holding is better than talking. I wonder if she even understood everything I said. I sound funny. 

When she gets back to me there are no suggestions and nothing I can take. My appointment in August in now a rushed appointment on Monday! Guess things are a little more serious than I thought. On the bright side... maybe I should get Leia certified as a therapy dog. I mean, this isn't the first time she has alerted me when things were about to go south, medically speaking. I guess we could be buds... my new PIC. Always watching out for mom. 

Hmmm, now I just need to figure out how I'm going to get to church on Sunday...

July 21, 2016

Every single day...

Well, today already sucks. I have pain shooting through my jaw and face, my hands feel like I am being stabbed with tiny pins all over while being strangely numb(ish) at the same time. Cognitively I am struggling to get words out of my brain timely, if at all. My joints hurt like a.... well, let's just keep it clean and say bad. They hurt bad.  Even with 1800mg of Gralise, various ointments and a pain patch. Good news is that my mom's friend sees a Rheumatologist without a referral so I called that office and got an appointment. I still can't get in until September, but at least I doing something instead of accepting "I don't know." as a good enough answer.

I'm just glad my hubby gets back in town tonight. He has a way of helping me relax and feel (if only a little) better.

July 20, 2016

My mom suggested I start a pain dairy to keep track of my symptoms so I know how I am doing and I can relay the most accurate information to my doctor… so here we are.

A few months back I was sent to another specialist to get an EMG preformed and he mentioned that I may want to check in to seeing a Rheumatologist in addition to my regular pain specialist. When I followed up with my doctor she made no mention of sending me to anyone else and I honestly had forgotten the suggestion. See, I forget things a lot. My mind is constantly swimming around in this hazy fog…

Ever since my misadventure in trying to get off my medications to get pregnant I have been in more pain than usual. Even on the drugs. Well, this morning I woke up and I was in pain again. Not crippling pain, but pain none the less. My mom has been bugging me about seeing a Rheumatologist since my doctor just says “I don’t know what’s wrong with you for sure” and “You are better than you were.”  She has insinuated to Lupus many times, but we don’t really know. I called my specialist and asked for a referral. About 10 minutes after I left my message I got a call back asking why I needed the referral. I had already explained all that when I left my message asking for it in the first place, but I explained again and let them know that the other specialist recommended it. Long story short… there was no mention of it in his notes so I was denied, but I could always make an appointment with her. Only thing is… she’s booked until September. I actually scheduled to see the RN in three weeks in hopes that she can at least refer me.

Why is “I don’t know what’s wrong with you for sure, but you are better than you were.”  supposed to be acceptable to me? Why not send me to another specialist they may be able to help? Obviously she doesn’t need patients that bad if we have to wait two months just to get in. By 3:00 this afternoon I felt (and still do) like there were thousands of tiny bugs crawling underneath my skin in certain areas. Not only is it one of the most disturbing symptoms I have, it’s also quite painful. Also, the pain in shooting through my face and jaw. My hands are also one of the most affected areas. They ache, especially in the joints, constantly and I can’t even wear gloves without just about coming unglued. The feeling of the gloves on my hands are almost like when you go weak in your knees, but with a stabbing sensation as well. Not fun.

All that being said, I am still thankful for the many blessings in my life and for the wonderful support system I have. I will choose to be happy. I will choose to be strong. And I will choose to keep my spirit high no matter how bad my body tries to drag me down.

“For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us.” Romans 8:18