Friday, July 3, 2015

AND FURTHERMORE SIR.....

I wrote a letter to the doctor that I had to deal with yesterday. I am disgusted by the lack of care and concern I received.

Dear Dr -----,
I met with you today as an OB Patient for my 24 week appointment. I had concerns and questions that I had hoped to have addressed. First being my concern for a diagnosis of suspected Accreta that I had received from Maternal fetal medicine. You dismissed the possibility that there could be Accreta and even rolled your eyes and scoffed at the MFM order for a 3d scan at 28 weeks, involving other nurses and Dr. ----- in the conversation as well. A conversation which occured in the middle of the hallway within ear shot of other patients (have you heard of HIPAA laws sir?) My thoughts on your attitude during today's meeting have been mixed with emotions (sure those hormones are all to blame though right???) For one, as much as I hope you are right and Accreta is absolutely not present, if it is even slightly suspected, I am thankful for any additional testing that could allow us to be prepared when the time comes to deliver my baby. Ultimately, we are taking about my life, my baby's health, and my uterus. You might not find a hysterectomy, or the possibility of bleeding to death, to be such a big deal, but I do. I would like to know what could happen and be able to prepare myself should the worst case scenario be presented. So continue to scoff and roll your eyes, I will continue to be thankful for MFM and their caution.
Among other questions was whether or not your practice does delayed cord clamping during C-sections. You told me no you don't do that, and stated there have not been any proven benefits to it being done. Well, I have read the medical journals and studies that have been published, and although I am not as educated as yourself, nor do I have the amount of real world experience of labor and delivery that you have, I can comprehend those medical studies. I know that the verdict is still out on whether or not there is a benefit to delayed cord clamping in Csections, but I am anemic, and I hope to breastfeed, so my baby won't be receiving iron through formula, that to me is reason enough to take the extra minute or so for delayed cord clamping to increase the iron stores in my baby's blood, giving her a better, healthier start in life.
Ultimately, I would like to say I trust the Dr who will be delivering my baby to be able to make judgements based on the health and well being of my baby and myself, and not what is easiest for him/her during the time of the surgery. I intend to create a birth plan, one that involves delayed cord clamping, I hope it will be followed. Obviously, fetal safety would be paramount and I'd expect normal protocol to be followed in the case any health concerns come up. However, if the delivery is going well, and baby is healthy, I hope my wishes will be honored.
After today's meeting, I don't think that you are capable of respecting my wishes, as you expressed through your attitude that I am just a silly woman who reads too much. You stated you prefer uneducated patients so that you aren't subjected to such nonsense as delayed cord clamping. Well, sir, this is my formal goodbye. I'm going to continue to educate myself on the procedures that would best benefit my child and myself. I'm going to find a doctor who I feel comfortable with, one who will be respectful of my wishes and concerns.
I hope you take this letter to heart and not just scoff or roll your eyes at another hormonal woman who think she knows a thing or two. And perhaps you could even learn from it and adjust your demeanor for your current and any future patients who find themselves in your care.
Thank you,
B.C.

Saturday, September 6, 2014

What is wrong with America?

It happens everyday, multiple times a day really. You see it on the comments of your Facebook feed, articles you read through on huffpost, in tweets, on youtube, and nearly everywhere else on the internet. "This is what is wrong with America today."
Our children are over privileged and  under disciplined. Our adults are judgemental bullies. We hide behind computer screens and say what we want without thinking about consequences.  We get in a huff when someone has an opinion different than our own. We all have our heads down, staring at tablets and smart phones not looking at the family and friends that surround us.
While these things may be true, it all looks only at the negative.
Look around you! Look at how much freedom our children have today!  Children are able to stand up and be who they want to be, gay, transgendered, lesbian, or straight.  They don't have to live in the same fear that just one generation past had to deal with. More and more of us are learning to let go of the shaming behavior that has been taught through the generations. We have passed on the teachings of being true to yourself and now those teachings are taking shape. We are free to choose our religion, our profession, our love, how we spend our time, where to live,  and so much more. Americans are free, more free than they have ever been before! To those who don't like that, go move to another country, just remember, at least you have the freedom to do so.

Tuesday, July 15, 2014

Disability is not pretty.

If you follow along on my facebook page, you know that I just read The Fault in our Stars by John Green. I could relate to so much about the ugliness of disease,  about having hope that it's going to get better just so that others don't know what you are going through, and about keeping your dying dignified.  I might not be dying, ok, technically we are all dying, but my death is not known to be an event to happen anytime soon. However, I am suffering daily from an incurable disease. One that is continuing to puzzle doctors and piss me off. I feel this obligation to "be tough", "stay strong", and "fight" through the pain for the mere benefit of the people who have to "deal with me" on a daily basis.  I have to put up a front like I am bigger that this disease and that the pain doesn't get me down at all. I pretend that I have hope it'll get better, even though it's unrealistic to think that I will get better. I will have good days, but I will not ever be rid of RA and it will continue to cripple me until the day I die. My RA is severe, and hasn't responded to any treatments that are supposed to slow the progression of the disease. I have days where my husband has to do everything for me, and the kids, and himself, on top of having to work all day to provide an income that I can't even help supplement. I can't walk all day at the Aquarium with my kids, I can't enjoy a boat trip out on the bay, I can't even go with the kids to the library without the pain tagging along for the ride. Yet, I do, not for me, but for them. I try to have fun. I actually do appear to have fun. I don't whine that I can't do it. I don't tell the kids that we can't do this or that, I just do it and put on the front that my pain doesn't bother me. For them, so that they don't have to feel the brunt of the side effects of RA.  They know I hurt, they know I have a hard time getting dressed and getting up and down, but they don't need to know that I can't have fun with them anymore. I am keeping my disability pretty for them, and I guess that's okay. Okay.

Friday, June 20, 2014

Get over yourself! An open letter to the passionate person I ran into today.

I get it, you are quite passionate about where you stand on all these massive political subjects such as gun control and abortion,  but could you not go on a 5 minute rant when I bump into you at the grocery store?  When I asked how's it going,  I meant with you and the family,  not the whole world. I really didn't need to hear how the whole country is completely destroyed because of this president,  who I am pretty sure you hate for the sole reason that he is not white. I didn't want to listen to you bash what's her name who can't find some email and therefore has caused the universe to explode. I have more pressing issues like finding out if the veggie chips are in aisle 16 or 17.
You may find that ignorant. You might think that I don't give a shit about anything but myself. Maybe you might feel that I should be more concerned with what goes on in the country I live in. Maybe you are right, but right now I just want to shop. I have my political views and I express them where they matter, where they will maybe make a difference, like to my local government, or on a political forum, not to an acquaintance I bump into at the store.
Thanks!

Thursday, June 19, 2014

Super easy way to make a perfect "Chevron" (Zig-Zag) pattern



I have been admiring this pattern, which has been popping up on so much, from clothes to walls, and of course home decor. ****Side note: Maybe you know, maybe you don't, but I now have a little store on Etsy where you can go and buy a custom wooden sign made by me. ****

 I wanted to add this little design to my signs, but my hands shake constantly and perfect lines are just not my thing; so, I came up with this easy way to make those perfect evenly spaced zig zags.

Things you will need:
  • Painters tape (I used stencil tape because I had it on hand)
  • surface of choice (canvas, wood, drywall, etc.)
  • Xacto knife or other cutting tool
  • paint
  • stencil brush or sponge dabber thingy :) 
Start by painting your surface the base color, I chose grey for this project. Obviously, if your surface is the color of your base color, you wouldn't need this step.

Then take your tape and start making your diagonal lines. I used a small piece of tape as a spacer to make sure the lines were evenly spaced:
***if you are really obsessive, you could use a protractor to get your 45 degree angle, but I'm not picky.





Now repeat the same process going the other way:




Now take your exacto knife and cut out the pieces in between:



VoilĂ 


Now paint your top color using a stencil brush/sponge:


Wait for the new paint to dry and then remove the tape:


So easy, kinda quick, beautiful "Chevron" stripes. :)

Now to add to that: You are my Sunshine.



My babe (5) loves this song. I have a cute memory to share about it too. He was maybe 2 or 3, we were shopping in Target, and I was singing this song to him. When I'd get to the "please don't take my sunshine away" he'd state that he was going to take my sunshine away. My reply was, "please no!!!!" and he would give the cutest little evil laugh. ~End cute memory story~

Hope you've enjoyed my little tutorial and feel free to stop by and shop my etsy store!

 My favorite item - your child's name painted on their favorite theme. You think it, I paint it! 



Thanks for stopping by!

 ~Love~
Bethanne




Saturday, May 10, 2014

Out of the darkness

I can't sleep. I have a lot on my mind regarding my current position in life, the people that have lost their battle with depression, and how I can make a difference.  There is an event coming up, I am sure you have heard of it,  called Out of the Darkness.  I would be a horrible voice on suicide prevention if I didn't participate, so of course, I will be providing links for you to sponsor me. I can't say that suicide is 100% off my mind, but it is only a random thought these days. I am much healthier than I was. The new meds haven't kicked in, but my pain would only rate a 4-6 daily as opposed to the typical 8-10 I was going through.  I still have my limits which cause me shame in my role as a wife and mother, but I am learning to talk down the shame and recognize the strength I really have.
It is true that a person needs a belief to hold on to in order to fight any struggle. Be it drug addiction,  alcoholism,  abuse, depression, and so on. For me, I lost faith in the religion I was brought up in, and I still struggle with turning to that God, when I am so unsure of his existence. However, I do strongly believe in reincarnation and that your actions in this life do directly affect your next journey.  This belief holds me to doing the right thing by everyone,  including myself.  Times get tough. We struggle.  We get through and we grow. The next life will be a breeze. (I am sure at this rate I'll be a princess within the next 2-3 lives.) But if I give up now,  I will continue to suffer each life until I learn to fight. For those of you fighting with depression or any struggle really,  I urge you to look for a beacon of hope, something to hold fast to, be it a God, a loved one,  or a personal goal, just hold on and come out of Darkness with me June 28-29th.

Monday, March 17, 2014

Carry On

I'm letting go. I am not one to hold a grudge, and truthfully can't blame anyone for what has happened. Is it fair? No. It's not fair for me and not fair for my family, but we will survive. Yes, I was let go, fired, while out on disability. I can't collect unemployment, I'm in no shape to find a new job just to have the same situation occur again, and I am even limited in the things I can do around the house. 
I need to get my RA under control and then I can find a job again.
 In the meanwhile, I'm brainstorming things I can do, crafts or maybe services I can provide to earn my keep. Hubby says we can survive on one paycheck, but we were barely getting by when we had two, so I know he is just trying to be supportive or something like that. I thought about my knitting or even jewelry making, but my hands are really sore, so it wouldn't be a good idea. I could watch kids again, but my dr appointments and my bad days would not be fair to parents relying on me, not to mention that I can't even lift up a quart of milk without pain, let alone an infant or toddler. 
So there is two other things that crossed my mind that I'd like to try. The first one needs a lot of research before I jump into it, but I like the idea. I thought about making my own homemade organic vegan friendly soap. I have the herbs growing in my garden, I have a few marketing connections, and there has been a growing demand for these types of products, I just need to ensure that I can do it right, and well enough to make a quality product. 
Second, I have a talent for drawing fun animated characters and making up silly stories for the kids that typically result in a  lesson on morals. Why not try my hand at children's books. I've jotted a few ideas down and could probably write a series about one of the characters I typically use, I just need to research how to publish them and hope that my talent is as good as I've been told it is.
So although one door has been slammed in my face, I've turned around to see a room full of open windows. And so, I'm carrying on, and not looking back. 

Monday, March 10, 2014

Update

I might as well have been told to just deal with the pain. I got denied the ability to be able to work from home on an as needed basis due to the department I work in doesn't offer the work from home option. Even though 98% of my job can be done from home. So, no it's not a hardship and not unreasonable, they just won't do it. There are plenty of other departments that offer the ability to work from home on an as needed basis. Hubby's department allows him to work from home everyday, with an occasional day here or there that he needs to come in to meet with clients. 
So, I have to return to work ASAP or risk losing my job. I'm not sure if that is considered bullying, or job discrimination, or just me being a whiny little bitch, but it sucks all the same. Now I need to get a note from my doctor stating I am able to return to work, but of course now I am starting a new flare and this time it is affecting the wrists and my ability to drive. I will more than likely have to taxi it to work this week since the medication I am taking for the pain won't allow me to drive, and truly it hurts too damn much to turn the steering wheel. 
I honestly wish they could understand what it feels like, but you can't understand pain unless you feel it yourself. 
My last resort was to request a transfer to a department which would allow me to work from home, but I'm so pessimistic at this point, I don't know why I even bothered to ask. 
The best I can hope for is that I go back only to be fired due to this absence. Sure we will have no money again, but I'll be able to focus on getting the RA under control and getting a job that would allow me the ability to work from home as needed. 
Wish me luck. 

Friday, March 7, 2014

Well hello there!

Hi it's me again, your old friend who has ignored you for the last, oh, 8 or 9 months...sorry! Really, I am so sorry! I hope you will forgive me, as it's been a whirlwind of a few months.
Let's see since the last post, there has been death of a loved one, a new job, pain, son's birthday, more pain, I got married, pain, Halloween and daughter's birthday, lots of new pain, Christmas and New Year's, disabling pain, new diagnosis, tons of snow, and even more intolerable cut-my-arms-and-legs-off  pain. Ay yi yi! When will it end?!?!

Ok, so to start, Death in the family. In early August, we lost a great man at a young age (62), Hubby's father. He died of heart disease which has prompted Hubby to actually get serious about his health and cut back a little on the fatty stuff. My new mother in law stayed with us periodically while she adjusted to not having the love of her life to say hello to every morning. It was a great thing having her with us to help get the kids ready and off to school, she cooked and cleaned and our house looked amazing for the time that she was here. However, it was hard because we didn't know how to comfort her. Their love was a rare thing, they met in Vietnam during the war, fell in love, war ends, he gets sent back home, honorable discharge, but can't find the means to get back to his love. He worked hard, built a life as a union worker, making minimum wage but saving every dime, to get back to his love and bring her home. He finally managed to get back to Vietnam, but he didn't speak a word of Vietnamese, or at least not enough to say, I am trying to find so and so. For two days he traveled all around the area he met her at, with a picture of her, going into local businesses and showing the picture asking if anyone knew her. He was on the verge of giving up, when low and behold, her brother saw him and recognized, "the american". He brought hubby's father home to hubby's mom and they lived happily ever after. Now that my dears, is a true love story.

There has been a few birthdays too! Babe is now 5, Love is now 7. I can't believe that it was 8 years ago that I found out I would be a Mom. Crazy, now I'm finally a wife too! I convinced hubby to get married. We did it quickly before he could change his mind. We had 7 guests, and it cost us a whopping 25 bucks! :) I don't regret a single minute of it. I don't think I would really want a huge wedding with the stress that surrounds it. Lord knows I have enough stress going on.

I started my new job in August, and my RA stayed controlled with steroids, but they really messed up my female health and I still was in a bit of pain with baker's cyst in both knees. I paid for out of pocket insurance since my job didn't provide benefits until after 90 days. However, due to the whole pre-existing condition BS, they didn't cover a single thing that I did. Bloodwork turned up with low hemoglobin, high platelets, and an ultrasound showed an enlarged spleen. I was told that it was the C word.

 I saw an oncologist, who ran more bloodwork and tests and considered it was just a symptom of the RA plus iron deficient anemia. I was put on iron for two weeks and followed up with him only to find that the iron supplements only raised my hemoglobin slightly. He upped my dosage of iron and I kinda felt better. My next follow up was at the end of November, and although I had new insurance that would cover it, I had just gotten written up at work and was determined to not lose my job, so I pushed my health aside and just worked, but the pain got worse. My knee had become so swollen, that the mere act of walking was just enough to make me breakdown in tears and pray for a quick death. I thought, I have 50 more years of this pain and it's only going to get worse. No medication was working, and even the thought of leaving the kids wasn't enough to make me want to live. I figured that having no mom was better than having a mom who couldn't even hug them without pain. I saw my rheumatologist, who put me on enbrel. I had relief for 4 weeks, then suddenly, I went to bed a little sore on a Thursday night, and woke up on Friday morning to find that my legs would not move.

I had just gotten written up again the day before and was determined to get to work on time. I skipped the shower, skipped the coffee, got to work at 8:30 on the dot, only to not be able to get up out of the car.

I cried.

 For 45 minutes I sat with my car door open trying to get out and just cried. Embarrassed, angry, depressed, and ashamed, I was about to just go home, give up, call out and get fired. Instead, I texted hubby and he had one of his co-workers come out to help. I still cried all day, the whole 8 hours I was at work. Every move hurt. Answering phones required stretching my arm, which was locked in it's place. I gave up. I wanted to drive my car off a cliff instead of going home. With an RA flare, suicide is a constant thought.

From that day until about 3-4 weeks later, everyday was a struggle, but I was never late to work again. My scorecard was 100%, and I was determined to prove myself. But pain defeated me. I called out of work the day after Presidents Day, and again the day after that.

I called my Rheumatologist for an emergency appointment, but it would be during the day the following week. I would need to call out again and be written up again. So I saw my family doctor instead. She put me on amitriptyline for the Fibromyalgia as well as some tylenol 3's for the pain. She wanted me out on disability to give me time to get this flare under control.

 So I called up work and let them know the situation. But I'm not protected under FMLA. I haven't been there a year yet. I had to fill out a personal leave of absence form, which my supervisor didn't approve. Even with a note from the rheumatologist stating that I was seen and had a procedure done. (He drained my knees and gave me cortisone shots in both, which only helped for a few days)

 Now, under the ADA, they have to provide me with some sort of "reasonable accommodation". So I have this new form to fill out in hopes that we can negotiate something. I discussed it with my doctor and we came up with something that I hope will work out. I think it is very reasonable to allow me to work from home on days where it is too difficult to come in, considering that the same company allows hubby to work from home full time, and majority of my job doesn't require me to be in the office. So pray that works out.

In the interim, I have stopped the Enbrel, as the Rheumatologist ran blood work and confirmed that it wasn't working. So now I am on Plaquenil, but I haven't seen any improvement yet. It does take a few weeks for it to take effect, so just keep your fingers crossed that this one works.













Friday, July 19, 2013

Grr, arg! Another rant.



Trying to walk in the shoes of the sick and afflicted while breathing freely and prancing in all your fine health, is no easy task. A task I felt no one was even willing to attempt to understand. The world of Rheumatoid Arthritis is relatively new to me, only being diagnosed 7 years ago. Yet, jobless and insurance-less (thus untreated), it has very much consumed my life for the last few years. I’ve been more fortunate than others, in that I have a network to reach out to for help. One that for two years helped me significantly more than one could hope, yet I had reached my crippled hands out at their worst only to find an unmoving stone wall, blocked by fear of harmful drugs and expensive therapies, ones that were expensive enough to ensure my children wouldn’t be able to go to college if they wanted a mom to be able to walk with them through childhood. That wall did me in. The choice of my children’s future verses my own health for my children’s present was the debate I woke with and the question that plagued my dreams for 7 months. Who was more paramount in my mind, what did I have to live for, what amazing people could they become even if it meant I couldn’t be by their sides?
Yes, I have a disease which has plagued millions, and will continue to plague the world until we are gone. Modern medicine has turned this disease into nothing to baulk at, unless you are without health insurance and jobless and severely depressed and have lost all hope.  I was at my wit’s end. Calling in my inner Charlotte Anna Perkins, I wanted to end the pain. Surely this is no way to live the remainder of one’s life, being so severely depressed, unable to dress myself let alone think I may one day hold a job and be able to afford to get out of pain, I was ready for desperate measures. Luckily, I didn’t get so dramatic. I was still sensible enough to fight, and this was ONLY Arthritis for crying out loud. Instead, I decided on a trip to a doctor using our only grocery money available for 3 weeks, and found I was not dealing with the Rhuematoid Arthritis but Lyme’s disease, and it wouldn’t cost too much to cure it. (Or So we thought) I’m at a debt of $6,000 and counting with in just a few weeks in hopes to rid myself of pain and the depressing thought of ending the pain simply and quickly. I’ve had 2 good weeks out of 4, a good percentage compared to where I was just 4 weeks ago. I am getting better, but so slowly. Once I’m out of steroids, I’ll be in pain again but hopeful not so much pain.
What could possible help me more than anything right now? A job. I am getting angry and bitter about being jobless because I have been trying everywhere, everything, yet I’m “not good enough” all over again. Who can tolerate all this rejection and not be affected by it? Who can sit around and be told for 3 months that, yes, you will be given a formal offer of employment once we get approval from upper management. (Come to find out that company just had to cut their staff, 175 jobs gone!)   Why interview someone for a position you are not ready to hire for? Bitter. Yes. I’m very bitter at this point. If I had been hired within a month of the interview that 3 people advised me had “gone very well” I would have been insured for 2 months already. I wouldn’t have had to sell the last item I had in my name, I wouldn’t  be blowing grocery money on getting myself better, I wouldn’t be $6000+ in debt right now.  
I tried not to focus on the “if only” and the” could have been”, all the negative thoughts. Then there is the staffing agency that promised me a quick job, temporary, no benefits, but hey, it’s a job….6 weeks later, still nothing and now phone calls aren’t being returned and I can’t seem to get through to the recruiter that is supposed to be helping me. Apparently, she slotted me into a position with the same company that I’ve been waiting on for 3 months, and she can’t submit me for any other position because she is waiting on them. If I withdraw my candidacy, I look bad in the eyes of the company and potentially lose a good position.
I’ve applied at countless number of places and haven’t gotten any other bites. I know the industry I am familiar with isn’t stable, but PLEASE, I need a job, my health and children depend on it!!!!!!!!!!!!!!