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.

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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!

Warning: This Blog Contains TMI

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You have been warned. You might want to turn back not, especially if you don’t do TMI well. Let me be honest, I don’t share TMI well, so this isn’t easy for me either. I feel beyond horrid today. While my throat is no longer sore and I’m not stuffy, I can’t shake the annoying cough. I can handle that for the most part, except for the occasional coughing fits that sound like I’m going to hack up a lung.

The TMI part comes in after I provide a little background info. As I have mentioned in several blogs, I lost my mom to ovarian cancer when I was 14-years-old. Because of this, my gynecologist has me on birth control pills to suppress ovarian function as a preventative for ovarian cancer. I’ve been on the pill since my youngest daughter was about 6 months old, so for argument’s sake, let’s say 7 years. It’s a low dose pill, and the first one that is so low that it doesn’t make me nauseous.

A few years ago after having a spell of horrific migraines, I was switched to being on the pill for three months at a time, and then one week off to cut down on that hormonal migraine week where I get the terrible migraines. All this has been fine. No problems at all. With the pill I’m on, I hardly even get a period (here comes the TMI). But as I mentioned in a previous blog, I’ve been feeling bloated and like something was wrong.

I was having sporadic sharp pain on one side, but it was not enough to worry about–just here and there. I actually have a high tolerance of pain (or so I’ve been told) so it’s not like I’ve been doubled over in pain or anything, more like a sharp cramp and then it’s done. Out of nowhere today I got a very heavy period. I can’t remember the last time I had one like this but it was after I had a large cyst and it burst. So, in some ways, I’m actually feeling a tiny bit better. Okay, I’m in pain, and I physically feel like shit, but mentally I’m thinking it was likely a large cyst again; it burst, and I’m going to be okay.

Of course, I will have to confirm this first at my gyno appointment on August 5th and then at a subsequent ultrasound that I will schedule right after the appointment. It may sound silly, but I feel like it’s a positive thing that I feel like crap. There’s me…looking for a silver lining!

I was asked to do a guest blog on a rheumatoid arthritis site. I will post the link when it appears. I’m actually really excited about it. They are looking for some personal stories and they approached me because of the blog. I love any site that brings awareness to RA and the people who are living with it. I have learned so much from the people I’ve connected with through this blog and look forward to continuing that and heck, if I can connect with more of there, that’s great too.

I think we all bring something to the table, whether it’s a simple trick we’ve learned to help get through when your hands are swollen, or an uplifting story about accomplishing a goal with RA. Boy, after my trip to Disney last week, I’m anyone’s cheerleader. It really reaffirmed to me how difficult it is to live with an autoimmune disease like RA, and let’s just throw in my fibromyalgia for a little more fun. My mind wants to keep up with my family and do everything, but my body can’t. That was a really tough lesson, and I had to learn it myself. As much is it sucked getting sick or almost crying standing in line on the third day in the parks, I had to try.

Now I know what is best for me and how to space myself out. It’s not ideal and it likely never will be again, and yes that really sucks. I know, though, that it can always be worse. Okay, I probably won’t be the mom running the marathon or who can stand on line for 6 hours to wait for tickets for a concert. I am the mom that will be waiting inside with hot cocoa or will always be there to talk or listen. Again, not perfect, but I have to find acceptance. My trip helped me a bit with that.

As I stood in Hollywood Studios leaning on my son in the Star Tours line and he knew I was not okay, that made it far worse than needing that darn scooter. My son came home with questions like, “Are you going to have RA forever?,” “Is there any chance that you could get better?” and things like that. I’d rather just not have him see me at my worst. It’s okay that they understand Mommy needs to rest a lot and Mommy is in pain sometimes, but Mommy didn’t need to push herself that hard. I don’t need to let my RA control me…I just need to be a better scooter driver and control my own RA!

Tonight’s picture is a cast picture of all the Munchkins in the Wizard of Oz, including my daughter. Opening night is tomorrow night. I’m so excited!!

Panic Attacks Suck and Other Deep Thoughts

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I’m having a panic attack. It’s worse than my usual panic attacks. This one started a good 20 minutes ago, and has gotten progressively worse. I’m not exactly sure what brought it on. It hasn’t been the best week. In fact I’ve written about 4 blogs, but haven’t published one of them because I thought they all sucked.

It’s just one of those weeks where nothing I had to say seemed like it held a candle to what the people around me were going through. On Thursday a friend from high school lost his 11-year-old son in an ATV accident. I made the mistake of looking at his wife’s Facebook page, and I haven’t been able to put it, or her, out of my mind. I can’t imagine anything worse than losing your child.

She put up a frantic post that the boy was missing and asked for people to help her search. That was followed by people praying and others who had faith he’d be okay. But he wasn’t. It’s hard as a parent not to immediately think “what if”? I want to reach out and do something, but really what is there to do? Of course, I’ll make a dinner and offer to do whatever I can, but they lost their child. Realistically, nothing is going to help them. Their lives are never going to be the same.

This whole thing really sent me into over-protective mode. I’m kind of neurotic anyway, but that “what-if” fear is present and I’m having a tough time quelling it. We also lost a family friend to brain cancer today, but that situation, although very sad, is a different one. He was young…younger than me, but he was suffering terribly. He left behind a young wife and a two-year-old so my heart obviously goes out to them. Just a lot of sadness and loss this week.

That makes the fact that my son knocked a lawn chair into the pool and ripped the lining causing a massive leak into my yard seem pretty darn small. But we still had to deal with the chlorinated lake in the yard and the one foot left of water in the pool with the leak. Good times!

There’s a lot going on, but I can’t even tell what it was that sent me over the edge into a panic attack. I was sitting in bed looking for dresses for my daughter’s vocal recital next weekend. I wasn’t aware that we needed a fancy dress, but the girl she is singing a duet with has a very fancy dress. Her mom showed me a picture today…it was like a Christmas dress. All we were told was they need to dress in black for one portion of the concert. I didn’t think we were going formal, but I can’t have my daughter in a cotton dress with her kid decked out in sequins and satin.

It’s so silly that something like that was the straw that broke the camel’s back. Sometimes it’s the last thing in a string of things overwhelming you that does you in. My body is fighting the exhaustion. I know I need to really rest at some point tomorrow and Monday to get through an emotional week of wakes and funeral services. I don’t do well with those. Who does? But especially the funeral of a young child…the same age as my son. Not going to lie…that’s going to be just plain awful.

It really puts my autoimmune issues in perspective. I often feel like crap, but my kids are healthy. I’d take that any day. I’m still having hip and back pain, but overall since I’ve upped my Celexa, I haven’t had a panic attack like this. I took a Xanax. Ok, I took a Xanax and a half. It was that bad. I’m just starting to feel it kicking in and the headache that was starting is beginning to subside.

If you are the praying type, I’ll ask that you send a prayer or two for my friends’ families. They are all really good people, and somehow, someway, I pray that they find some peace. If you’re still reading, thank you for letting me unload a blog that was mostly about other people tonight. I just needed to get it out.

And for a bit of humor to leave you with, the picture on top of the page was something I found tonight while going through some papers from my 7-year-old. The last line was suppose to read, If You Give a Pig a Pancake, but she spelled IF wrong. I covered the rest of the text to show you what I saw when I first looked at it. It was the best laugh I had all day.

Two-Faced People Annoy Me

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They are everywhere. Two-faced people. As I mentioned last night, there was a situation at my son’s school and another boy, who happens to have some severe anger issues and needs attacked him during gym. I get that it might be the subject of concern for other parents. This is the fourth time this year (that I know of) that this boy has snapped and attacked another student for no reason. I understand concern for my son, and I understand the concern for safety for other students, but I’m not an idiot.

If you don’t give me the time of day on a regular basis, please don’t email me like we’re best friends when you want information. I’m gong to give you as little information as possible. Something like…My son is doing fine. Thanks so much for your concern. Buh-bye. Okay, I left out the buh-bye, but I was thinking it.

One mom went as far as to ask if I was pressing charges, if I contacted the parents directly, what I said to the school, how the child was being punished…and accused the boy of being the next Adam Lanza (the shooter from Newtown). Now, I’m not thrilled that anyone put there hands on my child. This never should have happened. I’m even surprised at how calm I am about it, but perhaps it’s because I understand that it wasn’t personal. It wasn’t with malicious intent toward my son. There wasn’t a vendetta behind it. It doesn’t excuse the behavior, but it does make it different in my mind.

However, today, my son told me his back was bothering him where he had been kicked. I guess I was so concerned that he got punched in the head, I’m not even sure if I heard the part about being kicked in the back, but he has a good deal of swelling and bruising. So, Mamabear kicked in. I sent an email to the principal and let him know that tomorrow morning I’d be taking my son to the doctor to have the injury looked at because of the swelling. I thought that because there wasn’t any significant bruising yesterday I should notify them in writing. I also, in as nice a way as I could, mentioned that I did have concerns on what was being done to address the violent outbursts that this child was having. Clearly a suspension wasn’t working. I know they can’t tell me what they are doing, but as a mom, I want to hear that steps are being taken to ensure the safety of the other students in the school. I also want my sons injuries documented by our pediatrician in case something else happens. Maybe that sounds terrible, but it’s what I feel I need to do.

Anyway, today was better in terms of my pain level. My allergies have been bugging me, though. Toward the end of the day, my right hip and leg were sore and I had to sit down and end my day a lot sooner than I wanted to. Needless to say, my house is still a disaster. I have to bring my daughter to a two-hour vocal rehearsal tomorrow and then hopefully I can clean for a while. We don’t have major Father’s Day plans. Later in the afternoon we are going to stop by my Dad’s house, but as far as I know we aren’t doing too much around here. Possibly going on the boat for a bit. Did I mention I’m not a boat person? I’m a freakin crab tonight!

I will suck it up because it’s Father’s Day, but only after I vacuum and clean the bedrooms. At the moment I feel like I need to hook up my heating pad or go grab some ice for my back. The end of the day is always so difficult. Sometimes I just wonder if it will get easier. I do have days that I feel pretty good, but it’s rare that by this time of night that I still feel good. I’m trying not to complain, but being in chronic pain gets old. You forget what it’s like to not have the pain. To walk around without the aches and pains or stiffness.

I don’t remember what it’s like to sit for an hour and then get up from a chair and be able to do that quickly. That pretty much debilitates me. I’m just asking my readers and cyberspace friends? Does it get better? Is the medicine making it better for you? I’m off of almost everything at the moment, and I’m wondering if it’s all worth it. Let me know your thoughts.

 

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.