Monday, June 9, 2014

Why I hate the pain scale.

"On a scale of 1 to 10, how much pain are you in?"



I hate that question. I think I'm beginning to hate it more than, "Is there any possible way you could be pregnant?" (I had a hysterectomy in 2008, and it's in my chart. "Oh yeah, it says that right here!")

If you live with chronic pain, the pain question comes up all the time. I really do understand why we are asked at every visit. Medical staff need to know how much pain you're in so they can figure out if a current treatment is working, if you need better pain control or what they can do to help you feel better. And, it is YOUR JOB to be HONEST! I have Pirformis Syndrome in addition to all of the other fun stuff. (Piriformis syndrome is a condition in which the piriformis muscle, located in the buttock region, spasms and causes buttock pain. The piriformis muscle can also irritate the nearby sciatic nerve and cause pain, numbness and tingling along the back of the leg and into the foot (similar to sciatic pain).) I've been suffering for a very long time and I've always said I was never, EVER, getting any kind of a steroid injection into any part of my body. Well, after years of pain, things were getting worse. My left SI joint was angry and the pirformis muscle just wouldn't let up. I was getting shooting pain down my left leg and sitting for any length of time was getting harder. I called my pain doctor, asked him several questions, cried, debated the pros and cons with friends, cried some more, then finally made the appointment to get both the piriformis and my SI shot up. At the end of March I had the injections done. Within about 10 days, I was bending over without hesitation -- something I hadn't done in years. I felt so much better and I was wondering why I was so afraid to do this for so long.

Six weeks went by and I was good. Very little pain, at all, for those 6 weeks. I don't remember when it happened, but at some point the piriformis injection wore off, and soon I was limping, feeling that familiar shooting pain when I sat down. I could only get comfortable laying down. I saw my pain doctor and I was honest, the injections were AWESOME! The SI has never felt this good but the other... it's back, and it's bad. He examined me, touched that one spot and I jumped. He checked the rest of my back, noticed I was tender in some other spots but it was nothing compared to the one area. It's funny, he made a comment about me being dressed. Not that I go to appointments naked, but when I'm in a lot of pain, I wear as little as possible. I have gone in wearing a tube dress and a jacket with Uggs in the middle of winter. I have fibromyalgia and sometimes clothing hurts. Do you know that throbbing feeling you get when you wrap a piece of string around your finger really, really tight? Some days that's the feeling I get when I wear a bra. And buttons and zippers don't always go well with RA hands. You make do with what you have to make yourself comfortable. I guess when you have a patient who typically comes in looking a mess, and this time looks somewhat together, you notice.

Dr. L offered me another piriformis injection and I jumped all over it. He said he doesn't usually like to inject fibro patients but overall I'm doing really well and the last set didn't send me into a flare, I really did benefit from it so he felt it was the best thing to do for me. I made the appointment for the following Tuesday before I left. 

Last Tuesday was injection day. I was in bad shape. We went to the Arthritis Walk on Saturday, I was miserable there, I miserable on Sunday and Monday. By time Tuesday came around, I was more than ready to get this done. I was unable to walk from my car into the hospital, it was that bad. Rick registered me, we sat for a few minutes and I couldn't get comfortable. The nurse called me back, I slowly got out of my wheelchair, hobbled to the chair so she could get my vitals. Then she says, "You're at a 10 pain wise." Really? Because I don't remember saying I was. I was in a lot of pain but I was still carrying on a normal conversation. My vitals were perfect. I wasn't crying or screaming. I was very fidgety and I was practically lying in the chair, but we were still joking around. 

I told her no, I was maybe a 6. I don't think she believed me. But here's the thing.... MY 6 can be YOUR 10. Pain isn't something another person can judge. I don't ask my kids, "On a scale of 1-10...." when they fall. When J snapped her arm, she cried for a few minutes. Matthew falls off his bike, he cries for HOURS. The worst pain I ever felt was after my hysterectomy. At the time I had undiagnosed interstitial cystitis and obviously, they need to cath you. Inflamed, angry bladder + catheter for 14-16 hours is not good. All of my insides were adhered together so they had to un-stick everything. Not to mention, they took out my uterus, which was also stuck to everything. I could not push that morphine button fast enough and they had to order me more because I went through an entire vial faster than expected. I remember wanting to die. I was wondering if I did the right thing and if the pain was ever going to stop. That's MY 10. I compare everything to that and I don't ever want to come anywhere close to that kind of pain again. The birth of the kids, both were c-sections, doesn't even come close to my hysterectomy. 

Just believe me when I say that my pain is really only a 3-4, or whatever low number I spout off, when to you I look like I should be close to death. As long as I'm not crying and screaming, "BRING ME DRUGS!" I think I'll live.




Saturday, May 17, 2014

We're back!

So! It's been a while! I took a long blog break for several reasons. It's been about 9 months since the last post, and that wasn't even my own.

So here is a quick run down: J is doing well. If you follow us on Facebook or Twitter, you've seen the updates. She's had her moments but overall she's doing pretty good. We've had to increase meds a few times over the last year because she's finally growing and gaining weight at a steady rate. This is HUGE! Poor J was always so tiny. She's actually catching up to Matthew and my guess is she'll be taller than I am in a year or 2. Again, this is huge considering we didn't even think she'd make it to 5 feet.

 On Thursday, Jordan and I went to see Lindsey Stirling

When I started this blog, J was 6 and Matthew was 4, or 5. Jordan turned 12 on April 1 and Matthew will be 10 in September. Over the past few months I thought about deleting this entire thing. Over the last few years I've found photos of my child being used by someone else as their own, and then last year I found a photo on a random site. There has been drama within the JA community over, and over again. I have lost some very dear friends, and just about all of my support. I don't participate in any JA forums/support groups anymore because I'm afraid I'm constantly being judged because I don't support the big arthritis charity. I know what was done to try to prevent my family from going to the conference last year because I don't support their advocates. Truth is, I don't care for this ONE particular person who is an advocate. I've never hidden this from anyone. But this person is a board member for an organization I DO support. And twice this person has been at events where my family has been, came up to the people we were talking to, ignoring Jordan and I, who she knows are also JA advocates.

There are people out there who are who don't care for me, and that's fine, but there are people out there who are scared because their child was just diagnosed with juvenile arthritis and are beginning scary medications. There may be hundreds of other JA blogs out there, but I'm keeping ours up. I've helped too many families connect with other families in their area, or answered a question that eased a mother's mind. The bottom line is, our experiences help others.

I can't do much about the photos. I can not post photos, or watermark them. But people can edit photos, and to be honest, the site I found J's photo on, they really don't care of a photo is marked or not. Obviously, I decided to post photos. Like I tell the kids, once a photo is out on the internet, it's on the internet forever. Anyone can do whatever they want with it.

Hope everyone is doing well! I promise, I will update more often.

  


Thursday, August 8, 2013

A special guest blog about pregnancy and motherhood by Mariah



This is something that many of us worry about in regard to our children, or ourselves. Thankfully, I wasn't diagnosed or on any of the strong meds I am now when I was pregnant. I should have been but that's a whole other story. You can follow Mariah on Facebook or on her personal blog, the link is at the bottom of her post.

My name is Mariah and I have arthritis. Unlike Jordan, I didn’t grow up with arthritis. Instead, I was diagnosed with rheumatoid arthritis (RA) at the age of 25 while I was right in the middle of law school. The diagnosis brought with it a lot of fear. I was very scared about what arthritis meant for my life and my future. Would I be able to finish school? What about my career? Would I still be able to hike and snowboard and do all the active outdoor things that I loved?



But perhaps my deepest, darkest fear was whether I would still be able to start a family. I had a loving partner and though we weren’t yet married at the time of my diagnosis, we already knew we wanted to get married and have kids. It was very important to us. But would I be able to get pregnant with RA? And, even if I did, how would I manage to be a good mother with all of the pain and fatigue I was dealing with? I felt lost and alone. It seemed like almost no one was talking about the issue of pregnancy, motherhood, and arthritis.



But slowly I found and connected with other women in my situation. I read Stacey’s story. I read Lana’s story. I read Christina’s story. I read Suzie May’s story. And even though their stories confirmed my fears that pregnancy and motherhood would be even more difficult with arthritis, they also helped me feel less isolated and alone. They helped me find hope and determination as I started down the path to motherhood. They helped me find the courage to share my own story too.



I think pregnancy, motherhood, and arthritis is an extremely important topic that doesn’t get enough attention. Seventy percent of people with RA are women, and many of them, like me, are still of childbearing age and may still want to have families. And there are thousands upon thousands of little girls, like Jordan, growing up with JA who may also want to become mothers someday. Those of us who have already traveled the rocky path of motherhood with arthritis owe it to those girls to provide answers, support, and, perhaps most importantly, hope. And even if we never meet in person, we can still support each other through bravely sharing our stories on blogs like this one.



So thank you, Stacey, for your help on my own journey to motherhood. I hope maybe someday I can return the favor to Jordan.




I want to thank Stacey for the opportunity to share a guest post on her blog. If you are interested in reading my pregnancy and motherhood story, please visit my blog: From This Point. Forward.

Thursday, July 25, 2013

This is my life

In early 1990, 2 kids met and started dating. I was 15 and Rick was 17.



We met shortly after my hips started acting up. Before my hips, my ankles had been casted for "unexplained sprains." The swelling and pain never went away. My fingers would swell up for no apparent reason. In winter, my hands turned blue. Not one doctor I saw put any of this together.





 After a few years of an on and off relationship, we decided to move in together in March 2001. 13 months after moving in, we welcomed Baby Jordan into the world. My pregnancy wasn't easy but looking back, I didn't have my usual pain. I had to have a c-section, I couldn't nurse and I felt as if I failed my baby. I sunk into a deep depression and I almost lost Rick. 




 



 In October 2003, 13+ years after we met, we made it legal. 













On September 23, 2004 Matthew joined our family. No, we weren't even married a year yet. We wanted the kids to be close in age so we started trying as soon as possible.





A few weeks after Matthew was born we noticed Jordan had a slight limp. She was 2 1/2 so it really didn't register that something could be seriously wrong. On Christmas Eve 2004, instead of making cookies, I spent the afternoon in urgent care. They did x-rays, told me she had fluid in her knee but she probably injured it. She should be fine in a few weeks. If not, follow up with her regular pediatrician.
 



Jordan didn't get better, she got worse. Mornings and naps were hell. She couldn't get herself out of bed. If I was downstairs nursing Matty I had to stop, which he did not like, or go up so I could carry her down while keeping the boy attached. That took skill! 

Her pediatrician referred us to an orthopedic surgeon. I didn't like him. He looked at her films, said there was fluid but he was sure she injured her knee. Jordan would be fine.

  I was not happy with that answer. I scheduled an appointment with a pediatric orthopedic surgeon.  Within a matter of seconds he told me she had juvenile rheumatoid arthritis. Say WHAT?! She's TWO! She was scheduled to have arthroscopic knee surgery in a matter of days. Her knee was drained, a biopsy was taken and she was officially given the JRA diagnosis.

Life for us has not been easy, buuuuut it hasn't been as bad as it could be. In October 2008 I had a hysterectomy because I had adenomyosis. My right ovary was covered in cysts so they took that too. In July 2009 at the age of 34 I was diagnosed with RA. Shortly after that, lots of RA friends joined in. Fibromyalgia, Raynaud's, my lupus labs go up and down. I am a walking autoimmune mess. The thing is, I've been living with this for far longer than anyone had thought. I am a JA'er just like Jordan. Because I wasn't officially diagnosed as a child, and all my specific labs for RA are either low or negative, I have sero-negative RA.
I'm sure you're asking yourself why I wrote all this when I've told our story several times and if you look hard enough, you can find it on this blog. I'll tell you....

Not too long ago Jordan said something about getting married. She didn't think anyone would want her because she is chronically ill. Rick took this one and this was pretty much the conversation.

R: "Is Mommy married?"

J : "Yes."

R: "How long have we been together?"

J: "Like, forever."

Me: "Still think you won't find anyone?"


Rick and I have pretty much been together forever. Yes, we had issues but we always found our way back to each other. Over 23 years and he didn't leave when our world was falling apart. He had people tell him if they were in his shoes, they would have left. Apparently those vows "in sickness and in health" don't mean much to some people. I wouldn't blame Rick if he did leave. Having a chronically ill child can tear a marriage apart. Having a wife AND daughter? There are days when I am surprised he's still here! 

I have days when I rely on Rick to do everything because I can't move or even get out of bed. If I could change ONE thing about our lives it would be curing Jordan. Of course, I can't. The best I can do is teach her how to advocate for herself and assure her that there are men out there who will take care of you when you are at your worst. If you meet someone and they can't deal with your life, they are not the person for you. All of us have had to make sacrifices. I believe these challenges have made our family stronger and closer. Even Matthew is so concerned about others and how they feel. He wants to help, always. 


Rick and I are a freak thing, I know that. But after all these years, seeing me at my worst he's always been there to help me. And for that I am eternally grateful. 




Sunday, May 5, 2013

Trying something different

So, here is something that I typically don't do. I am a firm believer in science and studies and PROOF that something works as far as my medical treatment goes. After all these years, and med after med after med, I decided to look into stones and the healing powers some believe they hold. I have ALWAYS been drawn to amethyst and sapphire. Once I started researching healing stones I realized out why. Of course, they're beautiful but now I'm wondering if there is more to it.

"Sapphires--

Known as the "wisdom stone", each colour of Sapphire brings its own particular wisdom.  It releases mental tension, depression, unwanted thoughts and spiritual confusion.  Sapphire restores balance within the body, aligning the physical, mental and spiritual planes, bringing serenity and peace of mind.  It stimulates concentration, brings lightness, joy and peace of mind.  Sapphire is also known as a "stone of prosperity", attracting gifts of all kinds and fulfilling dreams and desires.

Sapphire treats blood disorders, combatting excessive bleeding and strengthening the walls of the veins.  It is used for cellular disorders, regulates the glands and calms overactive body systems."

Interesting. "It is used for cellular disorders, regulates the glands and calms overactive body systems."

Most autoimmune diseases are caused by an overactive immune system. My AI diseases are a result of an overactive immune system.


"Amethyst--

Amethyst is a powerful and protective stone.  It guards against psychic attack, transmuting the energy into love and protecting the wearer from all types of harm, including geopathic or electromagnetic stress and ill wishes from others.  Amethyst is a natural tranquilizer, it relieves stress and strain, soothes irritability, balances mood swings, dispels anger, rage, fear and anxiety.  Alleviates sadness and grief, and dissolves negativity.  Amethyst activates spiritual awareness, opens intuition and enhances psychic abilities.  It has strong healing and cleansing powers.  Amethyst encourages sobriety, having a sobering effect on overindulgence of alcohol, drugs or other addictions.  It calms and stimulates the mind, helping you become more focused, enhancing memory and improving motivation.  Amethyst assists in remembering and understanding dreams.  It relieves insomnia.  Encourages selflessness and spiritual wisdom.

Amethyst boosts hormone production, tunes the endocrine system and metabolism.  It strengthens the immune system, reduces pain and strengthens the body to fight against cancer. It destroys malignant tumours and aids in tissue regeneration.  Cleanses the blood.  Relieves physical, emotional and psychological pain or stress.  Amethyst eases headaches and releases tension.  It reduces bruising, swellings, injuries, and treats hearing disorders.  Amethyst heals diseases of the lungs and respiratory tract, skin conditions, cellular disorders and diseases of the digestive tract."

Most of what amethyst claims to do, would be nice. I stress. A lot. I worry about things that I have absolutely no control over and never would in a million years. It's just who I am. 

"Relieves physical, emotional and psychological pain or stress.  Amethyst eases headaches and releases tension.  It reduces bruising, swellings, injuries, and treats hearing disorders.  Amethyst heals diseases of the lungs and respiratory tract, skin conditions, cellular disorders and diseases of the digestive tract."

Did you read that? Amethyst could help relieve tension, stress, headaches and PAIN. PAIN. 

Again, I am one who needs scientific proof that something works. So, why am I willing to give this a chance? Because I've lived my entire life in PAIN. Some days are worse than others and there were years where I don't remember having constant pain. I guess some could say I'm getting desperate or I'm giving up on traditional therapies. Neither are true. I'm willing to open myself up to different options. I'm not so stuck in my ways that I only see one answer anymore. Science and medicine haven't failed me or Jordan. I know without our current treatments we would be much worse than we are now. I asked Rick if he thought I was crazy for researching healing stones and he told me no. He said he's all for trying anything as long as we also stick to traditional medicine. We, Jordan and I, have changed our diet. I followed her lead. She wanted to go gluten free to see how her stomach felt. She did good. I know you are supposed to go totally GF to see results but we see them now. We know that when she has too much of something that she knows has gluten, she won't feel well. Her stomach will bother her and she knows she has the power to control that.

I've started eating more fresh fruit and vegetables. I don't eat much red meat to begin with so that really isn't an issue for me. I've been having GI issues for about 18 months now and my doctors don't know why. I've had test after test, but nothing shows up. Typical Stacey. They'll figure it out in about 10 years. In the mean time, I've lost over 30 pounds. 25 of that was before I changed my diet. Nothing has changed except my stomach hurts almost daily. I have to eat small meals, if I can eat at all. I drink mostly water these days. On occasion I'll have an adult drink or a coke but I can go months without it. I don't drink milk or have dairy often so it's not my lactose intolerance acting up. I believe my RA is attacking my GI system. I have no proof but, no one has proof it isn't. Tests mean nothing when it comes to me. "But your rheumatoid factor, CRP, ESR and all those other tests we do for RA are all negative. You can't have RA so I'll diagnose you with UCTD, undifferentiated connective tissue disease," said rheumatologist number one. Turns out that he gives just about all his patients that diagnosis when he can't figure out what's really going on. It's now well known that I do have RA, I just don't make the typical antibodies that are seen in the disease. In fact, 30% of RA patients don't which is why it takes some of us years to get an official diagnosis. Rheumy number 4 took a chance, looked at my family history and started me on Enbrel. It worked enough to prove I have RA but it wasn't enough so I started Remicade because J did so well on it at the time.

All this long babbling nonsense has brought me to this: 


I bought myself this heart amethyst pendant. It's not cut all fancy and it's not what you would find in a typical jewelery store. I was drawn to it as soon as I walked into the store. Is it going to help me feel better? I don't know. I wear sapphire daily and it hasn't done much to calm my overactive immune system. Or, maybe it has. Maybe I should be much worse or have severe organ involvement like others I know but don't because I'm always wearing my ring. The fact is, no one knows for sure. For $25 I have a pretty pendant that I like to touch because it is smooth. Which in turn, does calm me. Is it going to reduce my pain or swelling? I'd like to think it might.