Still Waiting for Answers

Ovarian Cyst

To say I’m feeling stressed is an understatement. Today was my annual pelvic ultrasound and mammogram. Because my mom died at 43 of ovarian cancer, and my grandmother also died of ovarian cancer later in life, I have to go for ultrasounds as a preventative measure because there really are no signs with ovarian cancer. So, it goes without saying that I get stressed before these appointments. Add to that the fact that this morning’s appointment was a bit out of the norm and I’m kind of a mess.

My insurance doesn’t cover ultrasounds so I opted out of the belly ultrasound and just did the vaginal one because they get a clearer picture of the ovaries with that anyway. The tech took a really long time and sometimes that is normal as one of my ovaries is up high. She then said that she was going to do the stomach ultrasound to see if she could get a better picture, but that she wasn’t going to write it down so I didn’t get charged for it, which was really nice. Although I was super thankful for that, it also concerned me. Was it because she saw something out of the ordinary, or that she just couldn’t get a clear picture of that left ovary?

As she was leaving the room the tech said that my doctor was in the office today and that she would call me later with the results. Well, I never received a call. So I have come up with the following possible scenarios. #1. It’s Monday, she got busy and didn’t get to my ultrasound results yet. #2. It’s not good and she’s going to call me tomorrow…if it was a simple call the nurse would have done it for her. #3. She saw it and it wasn’t serious so she thought she’d call tomorrow.

Now I’ll rip those apart. She’s known me for 17 years and she knows I stress. I don’t think #3 is plausible. So it’s either that she didn’t have a chance to read the results today or that it’s bad. I’m opted to take a half an ambien so that I can sleep and turn my mind off from worrying tonight. There’s nothing I can do until tomorrow. For the first time, I’m thinking it’s going to be okay. That in itself is a little strange, because I’m a glass half empty kind of girl. I like to prepare for the worst case scenario.

At the moment, I’m in bed. My kitten, Biscuit, is snuggled up against me, purring. That always calms me. He’s such a strange little guy. He carries around dolls shoes or small things all over the house. Everything is a toy, but it is usually something like a shoe from an American Girl doll (that I probably paid a million dollars for). I suppose I should be happy that someone is playing with it! Since I raised Biscuit and his sister Cookie from the time they were two weeks old, they are very attached to me. But, Biscuit is ridiculous. He loves everyone from me to the cable guy. He just walks up to anyone and jumps in their lap to snuggle. The cable guy was here last week and he jumped right in the guy’s tool bag and started purring. My cats keep me calm and mostly sane!

Some good news for the day, which was very unexpected…my son won an essay contest at school. I’m going to sound like a horrible mom for a moment, but I almost didn’t believe him. He didn’t even want to enter the contest, but when I found out he got 10 extra points on his first test if he entered I made him do it. While I didn’t write it for him, I sat and brainstormed ideas with him about what he liked about science, asking him questions about experiments he did last year. I did proofread the essay, as my son is dyslexic, and it’s also safe for me to make sure he used complete sentences and that there weren’t any typos.

I thought the essay was okay. It wasn’t the greatest thing I had seen but it really did reflect him as a learner and how he learns best by doing hands-on projects and that his reading issues make textbook learning more difficult. He came home all excited today that in he was one of four students in his class that one the contest, which means he gets to go one four science field trips where they get to do hand-on learning at different places.

My son has never won anything academic, so even though I don’t think this was award winning in terms of his essay work, he did well and he must have said something that they liked enough to pick him. To see his genuine pride and excitement was the highlight of my whole day. For a kid that spends a lot of time trying to play catch-up in school to his peers reading level, etc., it was awesome to see his sense of pride in this accomplishment. I was one proud mama and I think the science field trips will be an awesome experience for him.

I’m going to end tonight’s blog on that high note, and hope I can do the same tomorrow. Good night autoimmune friends!

 

 

 

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It’s My Baby’s Birthday

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Today is my son’s birthday. He waited up until midnight so he could celebrate, and then said, “I can’t believe I’ve been alive for eleven years. That went by so quick!” He’s not kidding! It seems like yesterday when my water broke and I was concerned about taking a shower and shaving my legs before going to the hospital. Heck, I had no contractions, so there wasn’t a real issue.

When my contractions started, about a mile from the hospital, they were intense and two minutes apart. That certainly wasn’t how the woman at the birthing class explained it would be. I heard things about laboring for hours and contractions being 15 minutes apart for a day. When I got to the hospital, I was 8.5 cm dilated. I got my epidural and had my baby two hours later. I waited years to have baby and there he was.

I look back on all the things I’d do different. I was a new mom who had never changed a diaper. I’d have held him more, snuggled more. Those moments just go by so quick. I remember rocking him one evening when I was pregnant with my daughter. It was late and he really didn’t want to go to sleep. I started singing a lullabye and for whatever reason he thought one verse was the most hysterical thing ever. He had the best belly laugh. So of course I kept singing it, and we’d laugh together until I was crying I was laughing so hard.

My son isn’t an easy kid. There is no manual that came with him. He’s got terrible anxiety, puts way too much stress on himself, is insecure, and has issues with reading and learning. Things are a bit of a struggle at times. Then again, I can turn it around and tell you that my son opens up and tells me anything and everything he’s feeling. We are emotionally very close. We have the same warped sense of humor, and when he needs someone to pick him up when someone has kicked him down, he knows I’m his biggest fan. I also get him to see the best in himself (okay, that’s a work in progress), but it is happening. My wish for him is that he’d see what I see when I see him. He’s handsome, smart, funny, and friendly. He’s thoughtful and kind.

Other than the birthday…which translates to me having to rush around and clean the house with no nap, I have to figure out how to decorate and get everything done. I’m not cooking, but I still feel like I need appetizers, plates, beer, soda, etc. Oh my mother in law is bringing the cake because the needs to show the world that her cake is the best.

I had my appointment with the ENT today. He numbed my nose, stuck a think scope up my nose and down in my throat to look around. I was asked to breath, and to make humming noises so he could watch the vocal chords do their thing. He said everything looked ok, which is good news. I asked if he was able to see my thyroid and he said no, but that if there were anything like thyroid cancer, the vocal chords would be affected. So his only advice was to try not to talk as much. Um…is he for real?

I’m Italian! I yell all the time. I will be quieter when the kids go back to school, but I don’t think I’m that loud. I’ll give it a try resting my voice. I mean it’s not like I’m talking during all the extra sleep I’m getting.

I’m debating on calling for my bloodwork tomorrow. I don’t usually do it. I usually think if it’s bad they call, and if not that don’t. But this time I want to know. I want to know my numbers and next steps. I want to know if I should have a endocrinologist look at my labs to see if there is anything else that should be tested. I will worry about it all tomorrow and I will remember to ask for the numbers and then look up everything they mean. I can’t ask questions without the information.

As I’ve learned throughout this, you aren’t going to learn f you don’t ask questions. There are so many people willing to help! Just ask!

But for now the Ambien is kicking in and I’m off to bed.

 

 

Oh My Aching Back

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There’s no question why my body is rebelling at the moment. I have been going in high gear for more than a week, driving my kids from one practice to another, trying to keep up with work, social activities, sports, voice lessons, doctor’s appointments, and family obligations. I knew at some point soon my body would cry uncle and that day was today. I actually woke up okay, but as the day went on my body got more and more stiff, starting with my back and going into my hips, knees, and feet. At this point even my hands hurt. It’s the first time in quite a while I opted to take medication for the pain.

I didn’t think I’d fall asleep and I have to be up early for a meeting tomorrow, so Ambien was out of the question. I figure I have a good 20 minutes before the pain medication begins to hit. I can catch up with a blog. Besides, the pain medication doesn’t affect me nearly as bad as the Ambien. It just seems to take the edge off the pain without making me all crazy, like Ambien.

Today I started to get a little stressed about our upcoming vacation to Disney. I’m looking forward to it. Obviously I love seeing my children excited, I just don’t like tension, and traveling with family…especially my in-laws, can be tough. I’m just trying to make the trip about my kids and what they want to do. It’s going to be up to them and we’re going to play things by ear without over planning too much. Last time we have to follow everyone else’s schedule and I won’t do that again. I don’t mean to sound like I’m not excited. I am starting to get excited. I think I always get nervous before I travel.

This is the first big trip I’m taking since being diagnosed with rheumatoid arthritis and fibromyalgia. The last time we went to Disney, I had not problem walking for 9 hours a day for 8 days in a row. I don’t know how I’m going to do this time. Actually it was the week after we returned home that I felt like I got hit with a bus. At first I thought my legs were sore from all the walking,  but instead of getting better, it got worse and worse. The doctor diagnosed me with Lyme disease. That was the beginning of my journey with autoimmune disease.

After the course of treatment for Lyme didn’t help, I was sent to a rheumatologist, who didn’t think I ever really had Lyme disease. Long story short, here I am with RA and fibro, and I’m a little panicked about how I’m going to handle walking Disney in the July heat from sun up to sundown. I’ll be fine on the first day, but what if I can’t do it on the second day? Do I bring my cane? Do I think about renting a scooter? OMG, I’m thinking about possible renting a freakin Hoveround at Disney. This is a new low!

I suppose I’ll figure it all out next week and I won’t worry about it at 12:45AM when I have a meeting in the morning.

A short recap of everything else that’s happened. My daughter sang in her recital yesterday. It was such a huge moment for her. Two months ago she refused to even try to sing in it because she was so scared. She’s come so far in the past few years, but especially these last few months. I knew she was scared on the way there, but the little girl she was singing with was a little ham, and that really put my daughter at ease. The other little girl is very sweet and silly, which brought my daughter out of her shell, so to speak, and she started to have more fun with it. Heck, she even cracked a smile a few times during the performance.

She didn’t sing alone, and it wasn’t one of the solos that blows me away during her voice lessons. The songs were light and easy, but she did it, and even more than that, she said it was FUN! That was a huge moment in her life. I was a very proud mama!

My son is having a tough time with travel baseball. He’s in a hitting slump and it’s psychological. He thinks he sucks, and he’s telling that to himself. We bring him to the batting cage and the kid nails the ball. He gets up in front of the pitcher and he freezes. About 75% of the time he gets a walk because at the moment he’s the smallest kid on the team (he has my genes) and the pitchers have trouble adjusting pitches to him. The other 25% of the time he strikes out. Tonight I had a long conversation with him about this time vs, his spring team where he was hitting the ball really well. I think he really just doesn’t believe he can do it on this team. I have my work cut out for me, but I will get him confidence up.

And baby #3 is still vying for starting makeup tutorials on youtube. I have no idea where she comes from, but that kid just keeps me laughing all the time. From making me buy a kabuki brush so I can properly apply loose powder, to making sure I only apply blush to the apples of my cheeks, she is one smart cookie. I feel like so much time is devoted to her brother and sister’s activities that I need to make sure she gets back into her own things in the fall. Having three kids is not cheap!

Anyway, I should try and get some sleep now that my pain is slowly subsiding with the medicine. I don’t like taking this stuff, but I’m so thankful I have it for nights like tonight.

 

 

Go Away Exhaustion

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I don’t have time to be this exhausted. I taught my class (not nearly as hard as Tuesday) and went out for a quick breakfast with a friend that was diagnosed with cancer. I had no time to be exhausted, as I really wanted to focus on her. I wouldn’t say we are super close, but she is the type of person that you meet and love right away. She’s funny and kind, and she likes the same trashy reality television as I do.

She has had a crazy year, first with a blood clot in her leg and now with cancer in her bone marrow. The levels are very low and at this time they are watching er very closely with blood work every few weeks. Should something drastically change she’ll either need to do oral chemo or regular. Either way, suffice it to say, she’s got a lot on her plate. She is choosing not to dwell on waiting for that moment to happen because it could be next week or it could be ten years from now. They have no idea.

It was really inspiring to talk to her and see the way she was handling her situation, and it certainly made me put my own things in perspective. The other thing I left that breakfast thinking was that I am so lucky to have so many people in my life that crack me up on a daily basis. Laughter really does help with everything.

So with that perspective I went forward with my aches and pains and took them in stride. The exhaustion was another story though, as I came home and could hardly stay awake. I took a nap for about an hour and a half…really could have slept longer, but I had to pick up my older daughter early from school because of a dress rehearsal for dance.

I talked with my friends today about the situation with my son on the bus, and they spoke to their son. I’m just feeling a lot better about it. I got so stressed because of everything that’s gone on with my son lately and all the bullying, but these people are great parents, and I know their son is a good kid. It was good to get the other side of the story and I feel much better knowing that they talked to him and he understands a little better that my son is just struggling to fit in, something his parents said he struggled with last year.

My girls had their rehearsal and it was adorable. I love watching them perform. I think my younger daughter is so in lover with her costume, that she was just so happy to twirl around. She little class was kind of all over the place, but it was so darn cute. My older daughter has grown a lot as a dancer this past year. I’m really excited to see the show on Saturday. It will be fun.

In terms of my autoimmune issues, the only things I’m really struggling with is the exhaustion. I’m just so darn tired. It’s not that I haven’t been sleeping. I’ve fallen asleep around midnight every night or earlier, which for me is not bad at all. Taking the melatonin early has been helping me. Tonight I forgot so I took a half of an Ambien. I’ll end this blog soon before it kicks in and I start rambling or open another browser page and start shopping.

I hope everyone is doing well and having a pain-free evening.

 

Welcome Back Arthritis Flare

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Today didn’t go as expected. I should know not to have big expectations. My schedule was thrown off because my daughter was sick with a cold this morning and needed to stay home from school. This put off my plans to meet with the First Selectman until tomorrow, which was okay with me.

The Polar Vortex is back and it was everything I could do to get warm today. My hands were either on the heating pad or grasping a warm cup of tea. They are still stark white from the Raynaud’s and they are so cold that they ache. I ended up needing to take pain medication this evening as I could hardly walk and I started getting a migraine.

I can’t even tell you if it worked or not. I suppose the pain is lessened but when I have a migraine that’s the only thing I can feel. The left side of my neck to the shoulder is one big, giant knot. I keep trying to stretch it, but it hasn’t done much good.

Basically, I’m telling you that I’m one big downer today in terms of pain. Otherwise, I actually had a nice day spending some one-on-one time with my daughter. I worry about all my kids for different reasons, but my oldest daughter lacks confidence, just like I did as a child. I wish she could see what I see what I look at her. She is beautiful inside and out. While there are times when she gives me an attitude, she is such a genuine person. I love watching her grow and I’m more proud of her every day. I worry that like her mother, she’ll let her fears get in the way of her dreams.

Today she told me she’d really like to sing next year in the school fourth-grade play. This is my daughter that refused to speak to anyone for half of kindergarten because she was too shy. She performed in the Nutcracker the past two years, and I see how much she’s grown and trying things out of her comfort zone. I’m in awe of her. She’s such a good kid.

When I’m feeling down on myself I really do look at my kids and think, well, I’m not perfect, but my kids are kind and funny and good people. I’m doing something right despite my mistakes.

So here I sit at 10:30 at night with a migraine. Sleep is going to be difficult and I’m trying to decide whether or not to take a half of an Ambien. It’s such a catch-22 (one of many with autoimmune diseases). I need to sleep to help the migraine, but I can’t sleep because of the migraine. It might be stress related because of all the town drama and me getting worked up about talking to this guy tomorrow.

I am trying to tell myself he’s just a person. He might see himself as more powerful, etc., but he’s just some guy and I don’t care if he doesn’t change his mind, I am going to at least have him listen to me. Our town is so divided and dramatic right now. People are aligning themselves on different sides, and I want no part of that. I’m going to talk to him about my concerns for the education system, and that’s it. I’m just praying I don’t have this migraine when I am trying to talk to him.

For the moment, I’m sitting here watching “I Have 5 Wives.” How do I find these gems on television? In tonight’s episode the wives are all jealous of the wife who has the same birthday as the husband. The husband has stress because he is trying to keep them all happy. Clearly, this is must see tv. I need my readers to start watching this crap so I have someone to discuss it with!

Back to my hands for a moment — if any of my readers also suffer from Raynaud’s, I’d love some ideas for what to do when my hands get this bad. I know it technically isn’t a big deal, but when they are this cold and white, they really hurt. Even running them under warm water is painful. I’m so focused on the fibro and rheumatoid arthritis that I never really ask about the Raynaud’s. It’s more of a bother than anything else. I’d love some insight if anyone has it.

This post is very random tonight. I just re-read it and I’m all over the place. Chalk it up to me being scattered and in pain tonight. Tomorrow is another day.

Lots of Drama on Valentine’s Day

Photo by Hathuyanna

Photo by Hathuyanna

Valentine’s Day has never been much of a big deal to me. I scheduled doctor’s appointments and hair cuts for the kids. We got pizza and watched a movie together. We watched Wall-E, which might possibly be the most boring movie I’ve ever seen.

We ended up with about 13 inches of snow and there is a huge shortage of salt in the area, so everyone is freaking out. It’s getting all sorts of media coverage. I didn’t even attempt to shovel the snow after a night of crazy loud sleeting. I knew it would be too heavy for me.

The night turned dramatic a few minutes ago with my youngest daughter. We laughed at something she said, which resulted in tears and theatrics with statements like, “My heart is broken and I just don’t know if there is anything you can do to fix it” and “No one in this family loves me.” She has a flair for drama — my own little Sophia Lauren.

The good news about today was that some of the intense pain in my hands was gone. I still have the numbness and my lower back aches, but it’s a huge step up from the pain I was in earlier in the week. My swelling has gone down quite a bit. Tonight I’m doing a lot of research on sleep, more specifically non-restorative sleep. I can’t be alone in feeling like I can sleep all night and still wake up exhausted and unrefreshed.

While sleep has been in issue for me as long as I can remember, it wasn’t until lately that I have a whole new level of exhaustion. There are many days where I can’t make it through without a nap — again, it’s a blessing that I work from home, as that might be difficult in an office. I’m not only trying learn about the stages of sleep (which will make for another blog post), but different ways to get more quality sleep.

I don’t know if you’ve tried sleep medications, either over-the-counter or prescription, but with most of them, I wake up in more of a fog than usual. I think I’ve touched on my issues with Ambien in previous blog post. I have not remembered shopping sprees on Ebay (very happy that even on meds I’m a bargain shopper) and I’ve made several phone calls and written emails that I don’t have a single memory of in the morning.

Needless to say, I need help in the area of sleep. With my rheumatologist mentioning the possibility of starting Lyrica, he did also mention that it would help me relax at night. Perhaps an added bonus. Have any of you on Lyrica seen a benefit in your quality of sleep? I’d be really interested to hear how it has affected others.

We did have a Twitter comment asking about Orencia. For any other readers on Orencia for their rheumatoid arthritis, how long did it take to begin feeling a difference? Feel free to comment here or on our Autoimmune Mama Facebook page.

Sleep and Autoimmune Diseases

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It’s no secret that one thing people with autoimmune diseases like rheumatoid arthritis, lupus, and fibromyalgia need is sleep. But for many of us who suffer from these diseases, that can be much more difficult than it sounds. Johns Hopkins’ Rheumatoid Arthritis treatment information page says rheumatoid arthritis  patients “often need over ten hours of sleep a night, or eight hours a night and a two-hour nap during the day.”

Seriously? A 10 hours of sleep a night? That would be a dream. Between not being able to fall asleep and waking up in pain one or more times each night, I’d be lucky to say I get 6 hours of sleep each night. I do have the luxury of napping during the week on most days and that keeps me going, but I can’t help but wonder what it would be like to fall asleep and wake up feeling refreshed.

I wake up exhausted, no matter how many hours of sleep I have had. My rheumatologist reminds me at every visit that sleep deprivation can lower resistance and increase flares in patients with autoimmune issues. I’m not arguing that. I’m just saying sleep eludes me most of the time.

I’ve tried tea that is supposed to help you sleep, natural remedies like valerian root and melatonin. I’ve always used over-the-counter drugs to help you sleep, as well as prescription drugs like Ambien and Lunesta. While I do have an active prescription for Ambien, I don’t use it that often. If I’ve had three or four nights with very little sleep, I will break down an take one. The problem I have (well, one of them) is that I wake up even more groggy than usual. I won’t even get into the numerous phone conversations and online shopping excursions I’ve had on Ambien, which I have no recollection of.

I get made fun of for my morning or afternoon naps, but I honestly don’t know how I could make it through without them. I don’t have a normal tired feeling. It’s possible that people who don’t suffer from autoimmune issues don’t understand our kind of exhaustion. I’m not just tired, I am ready to fall over and can’t keep my eyes open.

I’ve had the privilege of connecting with a lot of new people through this blog and I’m wondering what you do to help with sleep. I’d also like to hear if you wake up with a numb sort of pain. This is new for me in the past month or so. I wake up and my whole arm is numb, but it hurts terribly. I’ve had the “maybe you’re sleeping on it wrong” suggestions, but it’s not that. It’s a stiffness through the elbow that causes a pain down through my fingers. I am basically unable to use the arm for at least the first 20-30 minutes of my day. Is this common?

As always, I’d love to hear from you. If you have any great ideas to help me (and other readers) fall asleep, please share. Knowledge is power and there is strength in numbers. It’s important to gain strength from others fighting the same fight.