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.

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