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.

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A Day of Ups and Downs

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If you read my post from last night, you know I was up late waiting for my eBay auction to end. I’m happy to say that I’m the proud owner of a sushi chef nutcracker (pictured above). So, my day started out on a high note.

My kids religion class was canceled this morning because the roads were very icy here in CT. People were posting on Facebook all day about accidents in town and nearby, so my plan was to stay in our jammies and watch television. My kids got a huge kick out of the Game Show Network. It was actually a really fun few hours until it got awkward when the questions on Family Feud included things like, “Name something that would be surprising for your husband to bring to bed on your honeymoon?”

Yep! When I yelled out “book” the kids all wanted to know why. I opted not to seize the moment and discuss what a man and a woman usually do in bed on their honeymoon.

My girls really wanted to go see Into the Woods this evening. I’ve been going back and forth about it because some people have said it’s too scary (they are almost 8 and almost 10). Others have said that the graphic stuff isn’t shown, so it would be fine. I don’t think they’ll pick up on the sexual things from the wolf (another reason not to prolong our Family Feud conversation), but I don’t want to pay all that money and have to leave because my youngest daughter is too scared.

When I finally got the urge to shower today, I went downstairs to grab something and water was pouring into my finished basement from two different spots. Last night we thought a bit of water was coming in from a pipe, but today it was clear that Mother Nature was to blame.

As I freaked out running back and forth to the two spots with the shop vac, I realized I wasn’t going to be able to keep that up for very long. My husband finally got home and began to build a trench leading the water from the crazy ice and rain away from the house.

Within about 30 minutes, the water slowed way down and it’s all but stopped now. It wasn’t what I planned on doing today, and it pretty much sucked. Despite sucking for the obvious reasons, add to that being on my hands and knees with the shop vac and that sent my joints into complete hell and subsequently canceled our movie plans. Actually, we also heard the roads still weren’t great, so that helped make my mind up to take the kids tomorrow. Praying that’s the right decision.

I’ve been researching weight loss plans to deal with the weight issues that having been, well, weighing me down for a while now. I need something that takes a lot of the guesswork out. I tried Take Shape for Life last year and I actually liked some of the food, but I didn’t do so well. I don’t know what to attribute my failure to. I think after the really tough first week and only losing three pounds, I was frustrated. People in the online support group were reporting 7-10lbs gone and I had a measly 3.

Anyway, I think I’m going to try another program that involves two shakes (or meal bars) per day and a healthy meal. They actually want you to eat every three hours. So what’s going to be different this time? I really wish I could answer that. The drive is there. I need to suck it up and do it. The programs I looked at included Ideal Shape, Shakeology, Isagenix (which a friend has been trying to get me to do) and 310.

Based on the ratings and the prices, I chose Ideal Shape. I’m going to give it my best shot. I hope to be able to order it on Tuesday. Up until yesterday I had my heart set on Isagenix. Two friends had great results, but it’s about $500 if I include the snack I’d need to get through the cleanse days. It also didn’t get rated as high as Ideal Shape in some categories.

Basically, the problem is me. I don’t feel that I’m eating enough to be this weight, but I’m going to give a serious two months to this program while I’m waiting for an appointment with another endocrinologist who specializes in endocrine issues other than diabetes. I tried taking the Metformin to treat the PCOS, but it made me nauseous and I didn’t have the insulin resistance that goes along with PCOS. I wanted to try something so bad, but I don’t want to be on a medication if I don’t truly need it…especially one that makes me nauseous.

This program also has some CDs to help me with self-hypnosis. Yep, I’m three shades of crazy, but I either have to be all in or not do it at all. I’m in. I want to look like myself this summer, not some fat version of me. The other thing is, losing weight has to help relieve the knee and ankle pain (I hope) from the rheumatoid arthritis. I also plan to chronicle my journey (even if it’s boring as hell) as a way to hold myself accountable.

I’ve also been going back and forth about going back on Plaquenil to deal with my arthritis pain. Also on my list to do this week would be finally going to get that blood test that my rheumatologist wanted me to get. I think it was called a Vectra blood test. It’s supposed to look deeper into the issue of RA, and once and for all have a definitive answer. Every specialist has something different to say.

Most agree that I have fibromyalgia. One thinks I have both fibro and RA. And let’s not forget the Raynaud’s. Can I just say that winter completely sucks with Raynaud’s? My fingers and toes are like painful icicles. As far as I know, though, there’s not much that can be done for it. That which does not kill us…oh whatever!

So Sick Today

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As I mentioned in my last blog, I was starting Metformin this week. I thought I was doing okay with it. I certainly didn’t have the “bathroom issues” that were commonly mentioned. I just felt a bit nauseous, but nothing I couldn’t handle. Until Friday. I had dinner, and my foot was again in hideous pain so I broke down and took a pain pill. Well the combination of the two sent me over the edge and I began throwing up violently around 1:00AM.

It was awful and I ended up not being able to sleep until close to 4:00AM. I was hesitant to eat anything this morning, but I ate a rice cake with peanut butter. I figured that was bland enough and I held it down okay. We went to my daughter’s singing lesson and then to Nutcracker practice and somewhere during the ride I lost vision in my left eye and I was in a full-blown migraine feeling like I was going to throw up.

I decided to go through the drive through and get a soda to try and calm my stomach. It was so bad that I asked the lady for a plastic bag just in case I couldn’t make it home. I ended up getting home safely and put ice on the back of my neck for an hour before having to go back.

Again, I had an hour or so of feeling okay, and then it was back and I was trying to get back home before tossing my cookies. I feel like I have very low blood sugar; that disoriented, cold sweat, nausea, etc. I slept for two hours and felt a lot better but needless to say, I’m not taking that medicine tonight. I’m going to take another day off tomorrow and try and start it at half the dose on Monday.

When I asked on the PCOS board, many people said they felt like that for a month or two. A MONTH OR TWO? There’s no way in hell I could be like this for a month or two. My son has his football conference championship tomorrow, and I need to be there. I can’t be puking at home.

I was forced to eat a slice of pizza by my family and surprisingly, I think that helped with the queasiness from the low blood sugar. I’m just hitting a wall. I want to lose weight and feel better, but I don’t know if this is the way to do it. I don’t want to be nauseous and puking all the time. Metformin may very well help with my PCOS, but given the fact that I have decided to go back on the plauqenil this week, after I see my rheumatologist, I don’t want to be on both. I’ll tell him everything and see what he says.

My foot has been in that terrible pain either once a twice a day since Halloween. Someone online scared me by saying they felt that kind of pain when their hand deformity started. It felt like the hand was clamped in a position, and that’s exactly what my toes feel like.

Last night really scared me. I’m not ashamed to say I was on the couch crying for my mom. Sometimes you just need your mom when you’re that sick. My mom can’t be here because she passed away at 43, so then I became irrational and started thinking I was beginning to get deformed feet, I was so sick and there was no end in sight, and I need someone to make sure my children are raised the way I want them to be if something happens to me.

Everything was hitting me at once, and add the puking to the mix and I honestly felt scared that something bad was happening. I spent today trying to imagine what my month would be like if I continue with the current meds. I don’t know what to do. I suppose I should call the endocrinologist and ask questions. At the moment, my focus is on being at my son’s football game tomorrow morning. That’s the only focus for now. My sister-in-law is taking the girls to dance for me.

I know my mother-in-law has big plans to go shopping for a new kitchen table for us, which is just so nice, but I don’t want to see her spend the money that she wants to spend. I have two ways to look at it. Her son doesn’t make a lot of money in their family business and we are living paycheck to paycheck. I keep hearing how it’s going to get better…for years. I know we can’t afford to replace the table now and I also know how much she has bought for her daughters. I shouldn’t feel guilty that she wants to do something nice. Her heart is in the right place, and at least this time she’s letting me choose the set (a nice step from when she showed up with all white furniture for a home with three kids, three cats, and a big black dog).

We just found one for half the price at Raymour & Flanigan that I liked just as much. She’s concerned that the one she found at Basset was heavier and will last forever. I’m not even sure I’m going to be up for this tomorrow. Like I said, first things first, I need to make it to my son’s big game.

I’m saying my prayers now that he has a great game. His confidence is increasing now that he’s further understanding the game, but I’d love to hear the announcer call his name for a tackle. His last tackle, they just announced the kid who got tackled and I know he was so disappointed (usually they say both names). If I had one wish, other than a team win, it would be for him to have some sort of special moment. Even a small one would mean the world to him.

I’m off to try and sleep. Wish me luck!

No New News; Just New Medicine

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My appointment with the endocrinologist went pretty much as expected. My bloodwork all came back in the normal range. As I sat there about to cry, I made a last ditch effort using the the research I did on Metformin being helpful for PCOS, and much to my surprise he agreed to try it. I didn’t see that coming. I was ready with my arguments, but he said that he has seen Metformin help with some patients even when their bloodwork did not show an excess of androgens (male hormones).

So here I am with my new prescription and I’m on the Facebook pages for PCOS reading the horror stories of side effects. It’s mostly stomach issues…people saying they couldn’t leave the bathroom for days. Sounds like a real joy! I opted to only take one pill yesterday as people were saying it was helpful to work up the dose.

I didn’t have any side effects at all, so I figured why not try both doses today. I took the second dose with dinner around 6:30 and I feel like I’m sitting here waiting for something to happen. Fingers crossed that I don’t have issues tonight. I have enough issues already.

Today was hectic. I had a team meeting about 45 minutes away and then sat in traffic for an extra 30 minutes on the way home. I wish I had more interesting things to say today, but at the moment I’m supposed to be editing a military fiction novel and I just can’t concentrate on it. I have another novel waiting to be edited so I need to force myself to get through it.

The novel itself is well-written. I don’t have a lot of work to do in terms of the editing itself, but I’m not familiar with all the military terms or places in Vietnam, so I’m spending a lot of time looking things up. I’m having a hard time focusing at all lately. I just have so many things going on. I know I’m trying to do too many things. What mom doesn’t? But it’s difficult to keep up.

Between Halloween and standing out in the freezing cold for 2 hours on Sunday to watch my son’s football game, I’m really feeling the effects of having an autoimmune disease. My feet were so swollen after walking around in my slippers on Halloween that I couldn’t fit in my shoes on Saturday. I squeezed into them (with my usual brilliance) thinking they’d loosen up, and within about 5 minutes my feet swelled so much that I had to turn around and go back home to get other shoes.

I want to be there for every special moment with my kids, and it’s just really hard when the after effects cripple me at times. It doesn’t mean I’m ever going to stop trying, though. It’s just frustrating.

I’m also learning that just because you care about someone doesn’t mean they deserve it. I guess I’m that person that always hold on to a little bit of the good in people. There are very few people in my life that I hate, if any. I just try and make peace with things and move forward. I’m frustrated because I’ve now had someone try and come in and out of my life as one of my friends is doing now. He’s not even my friend after all the crap he’s pulled. I guess I’m just confused as to how someone can be in a serious psychotic state and then a week or so later act like nothing happened. I am chalking it up to mental illness and trying to just cut off ties.

Okay, I have to get back to my editing.

Being the Bigger Person Sucks

American Football 2

Be the bigger person, blah blah blah. You know it’s what you’re supposed to do, and most of the time it’s the road I choose to take, but no one ever said it was easy…or fun. Today I was a room parent at my daughters’ Nutcracker rehearsals. Honestly, I love doing it. Getting to see them dance and perform is awesome, and it’s just a fabulous production. I love to see the behind the scenes of how they choreograph the numbers.

So that all went well. The problem arose when my former friend’s (the ass who hates that I blog) daughter was freaking out about not having a parent to pick her up. I let her use my phone to call her dad, and I guess there was some kind of mix up with the what he was saying and what the mom said.

He called me back a few minutes later to say that her mother should have arranged that. I had to explain that she wasn’t allowed to stay for an hour and a half between her two rehearsals because we’re still practicing at a studio and not on the big stage. He grew silent like it was a big deal to get her, so I (the bigger person) offered to drop her off at home. Why did I do this? I have no idea, mostly because I’m an idiot.

The kid is very fresh. I cut her slack because she’s had a tough time in her short life. She was snapping at me on the way because clearly, I got the info wrong. Not sure how I even factored into the situation, but I just said that she and her dad would work it all out when she got home.

Later, I received a text thanking me for the help. Then another text blaming the mom. I just texted back “no problem” and left it at that. I am not opening that door again. His level of drama gives me more stress than I can handle.

Then there’s my feet. Both feet are still swollen from last night’s trek around the neighborhood with the kids. My body is getting even with me for my crazy cat lady costume and wearing slippers. The toe pain from last night finally subsided, but I feel like it’s going to cramp up at any moment. I’m sitting here with a heating pad on it. I’m not even sure what the issue is. It feels like my pinky toe wants to lean left, and every time I move it slightly to the right, I feel like it’s going to get stuck again and cramp up.

It sounds ridiculous, but I’m in a lot of pain. Both my hands and feet are swollen, and on tomorrow’s agenda, in between shuffling the girls to rehearsals, I have my son’s playoff football game. It’s all in the same town, so it’s not a lot of driving, but Connecticut has been really cold the last few days. Today was just awful.

I’m trying to keep going until I see the endocrinologist on Tuesday, but if he says there isn’t anything wrong with me and he has no idea what’s going, then I’m making an appointment with the rheumatologist to start Plaquenil again. I’m hesitant to do it before meeting with the endo because I hate to start medications at the same time. I don’t have much hope for Tuesday, or at least I’m trying not to get my hopes up, but I’d really like to try the metformin and see if that has an impact on my weight and other issues related to PCOS.

Wish me luck on getting through tomorrow! I’m going to buy those disposable hand and feet warmers and hope they help. I’m going to need all the help I can get.

Don’t forget to turn your clocks back! An extra hour of sleep is always awesome. It’s waking up in the dark and having it be dark at 5pm that sucks.

 

 

 

Arthritis Hands Suck and Other Musings

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Everyone is posting on Facebook with their pumpkin recipes, jack-o-lanterns, and fall-themed things. To me, fall means the start of cold weather and the start of increased pain. Today was the first day in a while that I spent in bed most of the day. I couldn’t get warm, even with my heated blanket. My hands were cold, stiff, and painful. And to top it off, my youngest daughter faked being sick (age 8) because she missed coming to the gym with me.

You know those times where you are in a lot of pain and just want to sleep and something is talking incessantly? Yep, that was my day. I got to watch youtube videos on how I need to do her makeup tomorrow for her Elsa costume. She talked and talked…and talked. Even though she was incredibly annoying today (and I say that with love), I love the age she’s as and her out-of-the-box thinking. I love her exuberance about everything. Even on days like this, I know I’m very blessed to have my kids. They are everything.

I just spent the last 20 minutes on Amazon shopping for heated gloves. Those suckers are expensive. I’m going to try and buy a set of those heat packs for gloves and see if that helps. I have to go to my son’s football game on Sunday and it’s going to be cold. I don’t want to miss it because it’s the first game that he’s a starting player. I know I have written a lot about my son, and that he’s just not the star athlete that he wants to be, but for him, this is a huge moment. The coaches noticed how hard he’s been working and playing and they shifted him to a starting player because of it.

Don’t ask what position he’s playing because I probably don’t know, but I have heard nose guard and some other kind of guard. Someday I’ll be a football mom and understand the game, but for now I’m just super proud of my son. I feel guilty without much to say about my middle daughter today. She is thrilled that I’m going to be the room mom at Nutcracker this weekend and that I can finally see her practice the Ginger Clown piece.

I feel like everything else I have to say tonight is more of a grumble on not feeling well. I’m trying to keep my head up for my appointment on Tuesday, but I have to be prepared for the “non-answer” and no solution. I just want a reason for getting this heavy. I’m not eating enough to be this fat. I never thought I’d be one of those people looking for the quick fix to lose weight, but at the moment, that’s me. It just sucks. I hope the endocrinologist will at least let me try metformin based on my symptoms. but I have no idea.

Tomorrow is a busy day and I can’t sleep (even with a half an ambien). I have to work with my tutoring client and then my daughter’s class has a large pumpkin carving event at school. The whole fourth grade participates and she’s so excited about it. Then we’re coming home and getting ready to go to a party at the neighbors for Halloween. It’s very casual, and then we’ll go trick-or-treating. I know it will be fun, but walking around in the cold doesn’t sound appealing at the moment. I’ll get in the spirit at some point during the day tomorrow.

I just wish I could get some sleep now so I can stay awake and have some energy for it. I’m off to try. Sleep well friends!

Another Bump in the Road

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I’m not in a good mood today. I’m not sure when it went bad, but I think it was when I received a letter from the endocrinologist saying that the male factor hormones that they tested were all in the normal range. Elevated androgens are a sign of polycystic ovarian syndrome (PCOS). I still have every symptom of the disease, including the most important one of the highly cystic ovaries.

I suppose I could have had a normal result because I’m on the birth control pill and that could be helping to regulate those hormones, but it doesn’t change the rest of my symptoms. So what’s really bothering me? I’m afraid to walk into that office next Tuesday and hear that there is nothing wrong, and that they just don’t have a reason for the weight gain and other symptoms.

I gave up hope that I was going to hear that I don’t have rheumatoid arthritis weeks ago. When I self-diagnosed hypothyroid, I thought the muscle and joint pain might be caused by that. The endo was clear when he shot that theory down. I suppose the newest plan is to hear what he has to say on Tuesday, and then going back to the rheumatologist to start plaquenil again before it gets really cold and my joints get worse.

In the past week my hip, legs and feet have been stiff and painful. My hands have been experiences the neuropathy symptoms with the painful pins and needless and numbness. Who knew numbness would be painful? Believe me, it is! The colder weather also brings out my Raynaud’s, which just adds to the pain.

I’m frustrated tonight because I am still here with no answers and now I’ve already decided that the endo is going to say there is nothing wrong and to exercise more. I haven’t really been hungry at all lately. I’ve hardly had a snack and my meals have all been healthy. In my depression today, I opened the damn bag of Halloween candy and had 4 KitKats. Do I regret it? No! They were delicious.

The highlight of my day was at a clinic meeting for my son at school. They set up monthly clinics to stay on top of his progress after they fucked up on his IEP (Individualized Education Program) last year. He receives special education services for dyslexia and comprehension issues. My son can be a big pain in the ass when it comes to getting his services, mostly because he’s so afraid of looking different or standing out. I do understand that, but I’m trying to explain the harder he works now with comprehension and reading strategies, the less time overall he’ll need to go to resource.

Anyway, what a wonderful meeting. Each of his teachers wrote up really nice things about what a good student, and hard worker he is. Both is science teacher and his literacy teacher noted that he does struggle with writing, but both said he is working really hard and seeing them during his free periods for extra help. It was one of those meetings that you just can’t help but smile. I know school isn’t easy for my son, but at one point this semester he had straight As. He now has a B in Spanish, and that’s completely fine. He’s working his butt off, and I think (I hope) he’s also proud of himself.

I have a lot to be happy about, but I’m just not tonight. I’m blue and sad. Not sad enough to cry about anything, but with the exception of my kids, this just isn’t the life I thought I’d have. And, I don’t know whether it’s best to accept that I now have limitations, or try and find help to work through them.

I don’t talk about it with friends. I used to talk about it and my insecurities about it with my friend (the one who is no longer a friend). He was actually a good listener for a long time. The thing is, it went both ways as I was always a good listener to him…and he had no shortage of drama. When he told me that he didn’t want to hear that I didn’t feel well or was in pain anymore, it really hit me. Even my friends don’t get it. Of course, I have way more polite friends than him–many of whom ask how I’m doing and really want to know. Ok, maybe not many, but definitely a few. That one conversation though, made me re-examine how much I was talking about it.

I never thought that I was talking about it 24/7, but when he asked, I would tell him if I was in pain, etc. But, because someone pointed out that I was talking about it too much, I think I shut down. I don’t want to be Debbie Downer. I love to laugh and have fun. I smile and laugh more with my kids than I do anywhere else. I truly enjoy them (even when they are beasts). I thought there was a balance, and now I’m not so sure. I don’t bring it up unless people ask, except on this blog, of course. This is my place to vent and talk about my autoimmune issues and if anyone is annoyed they can simply stop reading.

I just wondered if anyone else has had a friend or family member tell them they are too focused on their illness. I always joke that I’m a hermit and not a people-person, and things like that are the reason why. I don’t want to open up and be shut down by someone.

I hope you all are having a pain free night!

Back from My Hiatus

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It’s been a while since I’ve written a blog. Actually, that’s not even true. It’s been a while since I’ve published a blog. I actually began writing posts on three different nights and just felt really overwhelmed with everything that was going on. Last weekend sucked. Friday my former friend whom I’ve written about in the past, really pissed me off and it was just a night full of his drama.

I wrote explaining what happened, but every time I started writing about it, I just felt like it was a soap opera and I wanted it all to be gone. Long story short, he’s been doing a lot of drinking after losing the last love of his life, and tried to suck me into his drama first by saying he wanted to kill himself, and then next by repeating something I said and posting it on Facebook, which set in motion a whole slew of issues. He loves drama and posted something about ebola on a local town page after I mentioned a conversation that I had with a local doctor (my neighbor).

Of course, he doesn’t feel like he did anything wrong, and when I didn’t see eye to eye on that he lost it. He said all sorts of crap that prompted me just to block his emails. Then he created a new email address to continue it. I’m guessing he must have gotten some kind of notification that his emails were not going through. I worked myself up a bit because I thought I was going to run into him at Nutcracker and I didn’t even want to see him. I kept my word and brought a bag of clothes for his daughter, and my youngest daughter gave them to her.

He did send a text thanking me for the clothes, and I just said no problem. As dramatic as that was, I’m glad it all happened. That makes me sound like a crazy person, but in some ways I didn’t want to get to the point where I cut him off totally, but now it’s clear that’s the way it needs to be.

The weather has been getting colder here, and my hip and lower back have been very stiff. I don’t have my follow-up appointment with the endocrinologist until November 1st, but some of my test results (the thyroid ones) came back completely fine. I’m not sure why the other results aren’t listed, but after doing a bunch more research on PCOS, I decided to buy some supplements and see if that helps at all. I went a little crazy and bought chromium, cinnamon, B complex, and co q10. I’ve only been taking them since Monday, so I don’t have anything to report on whether or not they are working.

I’m just desperate to find something to help. I feel like if I could just figure out why I’ve gained so much weight it would really help. It’s not only killing my self-esteem, but it’s also making it harder when I do exercise. I keep reading that people with PCOS are more likely to have heart disease, etc. I need to stay off of WebMD. I just want to get to my next appointment and have a plan. My biggest fear is that all my test results will be fine and there won’t be a course or plan of action.

So far this week, I’ve managed to be a huge bum. I feel slightly guilty that I hardly left my bedroom on Monday until the kids got home from school. It’s just that my weekends are so jam packed with me shuffling kids to one activity or another. I was out in the cold Saturday night for my son’s final regular season football ball game. I already knew they made the playoffs, but it was his first evening game, and though I still don’t understand football, even I knew it was a good game.

All in all, things are status quo. I’m not in terrible pain. I’m still tired all the time, but I’ve just accepted that this is the way it’s going to be.

Now let me say a few words about Renee Zellweger. I don’t have a problem with people wanting plastic surgery. Heck, if I had loads of money to spare I’d want a nose job. I’ve always looked in the mirror and just seen my nose. It’s too big for my face, but I live with it. What I don’t understand is wanting to look like a completely different person. I would never have known that was her, if they weren’t discussing it on the news.

Truth be told, she’s not a favorite of mine. She always looked like she was going to burst into tears in photos and I can’t stand the faces she’d make on the red carpet trying to look hot. That being said, I thought she was so much prettier before the surgery. She had a soft, kind quality to her that is just totally gone now. I’m not saying she’s not still pretty. She is fine, but I don’t understand to want to change everything. When does that end? I’d guess that once you start rearranging things and fixing things you don’t like, you’d likely begin to focus on another area you don’t like. Maybe go for liposuction next or a boob job?? I don’t know.

It just doesn’t make sense to me!

 

Is It Depression or a Funk

depression

It could be a bout of depression. It could be a funk, but it also could be that I’m irritated. I have been feeling better. My wrist is a lot better than it was the other day, and my pain level is very low. All in all, health-wise, I’m doing okay. I’m just still so tired. I fell asleep on a webinar last night and then heard them call my name and ask me to do tell the group about myself. Luckily, I wasn’t so far asleep that I didn’t hear my name, but it took me a moment to snap to it and answer.

The irritation comes in because yesterday someone asked me some questions about autism. I explained that it’s a very wide spectrum and while low-functioning, non-verbal children would likely stand out in a crown, there are so many kids with Asperger’s or that are high functioning ASD that the average person might not even be able to tell. I should know better than to discuss disabilities with this person, and I’m not even sure what prompted his question, but he responded with, “Don’t you think some parents just don’t want to admit that their kids are stupid?”

First of all, I’d never call any child stupid. I think there are plenty of stupid adults. Adults know what they are doing when they make stupid choices (or at least most of them do).  Mu thought was what kind of asshole asks a question like that. I responded with, “Well, there are neurologists and neuropsychologists that diagnose autism, but it’s possible you know more than them.”

Working with families that have children with all sorts of special needs, I hear many stories. No two children are alike even with the same disability. Two of my own children have dyslexia and they learn in completed different way. My son has difficulty with comprehension, and my daughter has trouble decoding. It is technically the same disability, but they couldn’t be more different.

So that set me off. But today is a new day and I just went for my last day of bloodwork. I took the steroid last night and this morning’s test for for the cortisol level. I’m just praying that they find some answers. The next hurdle is that I have to wait until my appointment on November 4th for some answers. That just plain sucks. I think that’s what has gotten me down the most. I just want so freakin answers. It’s frustrating to have different specialists disagree on my autoimmune diagnosis, and now it seems that after taking the more cautionary route of diagnosing me, my newer rheumatologist agrees that I not only have fibromyalgia but rheumatoid arthritis.

I really had my hopes up that it was a thyroid issue because that may have even changed the fibro and RA diagnosis because one of the big symptoms with thyroid issues is muscle and joint pain. Of course I ran with that and diagnosed myself with hypothyroid. It’s dumb I know…but if you had one shred of hope that you didn’t have RA, wouldn’t you at least dream about how great that would be. It was a bit of a reality check that these autoimmune issues aren’t going anywhere forever.

There won’t be a winter where my hands don’t turn white and blueish from Raynaud’s. There won’t be a day where I don’t have more than the average ache or pain. It sucks. But right now, I need to focus on some kind of PCOS diagnosis, as I already knew I had that from my days with infertility, but I just never saw it being an issue in my life again after conceiving. It’s just one more thing to add to the list, and that one isn’t even under the umbrella of autoimmune. I take a look at myself and this, holy crap is this 42? What am I going to be like at 52 or 72?

I’ll cheer up eventually. Perhaps stopping at Starbucks on the way home for an iced green tea will make everything better. It can’t hurt!

 

 

Stupid Hands

wrist-pain

I shouldn’t say hands…it’s really only one hand that I’m calling stupid tonight. I’ve been in terrible pain through my right wrist for the past few hours, so much so that I was sitting here in tears and broke down and took something for pain. I’ve actually never taken pain medicine for my hand/wrist pain. What causes me to take a pain pill is usually hip and low back pain that just affects one whole side of my body. So for me to take medicine for a wrist/hand, it’s bad. I suppose I should admit that I’m partially to blame.

Last night my girls wanted me to sit down and watch a movie with them and I hate sitting still. I thought it would be a good time to knit while I was watching Pitch Perfect. I love my knitting. I’m not very good. I made scarves. I don’t really want to learn to knit anything crazy or difficult because I find knitting very relaxing. If I have to follow a difficult pattern or learn crazy stitches, it loses some of the fun. I have mastered quite a few really pretty patterns and I look for new ones that are within my capability, but it’s just something that I like to sit and do. I knit throughout the movie and that may be why I’m hurting so badly today. I hate to think that two hours of knitting sent me over the edge because that doesn’t bode well for my relaxing past-time.

Yesterday was rainy and cold, and I’m hoping that the weather and damp cold are factoring into my pain level. Today the weather was really beautiful; it could have been about ten degrees warmer, but the sky was a deep blue and I had an hour to sit outside with my youngest daughter while my older daughter was in a dance rehearsal. We just sat outside and talked, and enjoyed the sunshine. I don’t do that enough. Don’t get me wrong…I sit and rest as much as my body tells me to because the alternate sucks and I’ve learned that the hard way, but I don’t always sit outside. It was nice.

I had a bit of drama last night and today with my former friend. I find it even too exhausting to get into (although it would probably be a good read). I just am at the point where I think he needs professional help. I was told a very in-depth story last night that I just find too many holes in. I hate to not believe in people, but then this morning he also mentioned that his new love broke up with him. SO…I think he was at a very low point and needed a reason to be validated for feeling as low as he did.

My afternoon ended with me shutting him down as to restarting our friendship. I left things nicely. I just truly hate drama, but I can’t open my life back up to someone who contacts me when everyone else shuts him out, or uses me as a punching bag when he’s at his depressive lows. I have my own full plate. Anyone who knows me well knows this is not an easy thing for me. I have the terrible habit of listening to people’s issues and being a good sounding board. It’s not really a bad thing, but it sometimes becomes one sided and that’s not fun.

The other thing is I’m learning to really put myself more toward the front of my own line. My kids will always come first, but if I’m not okay and healthy, I can’t take care of them, so I need to also take care of me. This means cutting back on people who annoy me and not being anyone’s punching bag and accepting a simple “I’m sorry” the next day. We ALL have those moments where we say more than we should have or something comes out wrong. I am not saying I’ve never made a mistake and apologized for it. That’s not what I’m talking about. I’m talking about someone who uses your insecurities to make you feel horrible and then says they are sorry.

Anyway, I’m content with how it all went down. I wasn’t mean, but at the end of the day, I still like me and the decisions I made.

In my “spare time” I’ve been deep into my research of polycystic ovarian syndrome (PCOS). I also learned that low vitamin D (my only strange result of my last bloodwork) is also a very common symptom of PCOS. I feel like we may be on the right track, but what sucked the most is when the endocrinologist point blankly said that my RA diagnosis wasn’t going to change. I suppose I knew that, but when I was researching thyroid issues there is the symptom of joint and muscle pain, and I’d be lying if I said I wasn’t the tiniest bit hopeful. So now, I may be looking at an autoimmune disease and a hormonal one, that has a high link to heart disease and cancer.

I just want and need confirmation so I can start dealing with it. I need to know. I’m going to have my blood drawn on two separate days this week, but my next appointment isn’t until November 4th. I really want to call way before that and find out my test results. Would you do that? I mean how hard is it for the nurse to call me back after the doctor has seen the results? Why should I wait until November to start treatment if my hormones are way out of whack and if my insulin resistance is off…or if my cortisol level is off.

I never thought I’d be a fucking medical nightmare at 42. It’s depressing. My mind has so much it wants to body and my body can’t freakin keep up. I’m hoping tomorrow is better because I have to switch out bins of winter clothes and pack away the summer ones. It’s one of my least favorite things to do. I also plan to de-clutter the girls’ room, but that might go better on Tuesday when they aren’t around. We’ll see what the morning brings.

As always…thanks for reading!

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