Browsed by
Tag: Health

My Last Visit With My Rheumy

My Last Visit With My Rheumy

 

I’m still sitting out back drinking my coffee and thinking. In a few hours we’ll be heading up north for my last visit with my rheumy before we move. He was my second rheumy and the first doc to really show that he cared. I was SO excited when he said he’d take me on as a patient. When I started infusions it was in his hall. The infusion nurses went on and on about just how awesome he is. I really, really hope that I can find one after the move that comes anywhere near his level of professionalism and kindness. I hope I don’t cry, lol! I guess we’ll see. 🙂

 

 

 

When Depression Stops You In Your Tracks

When Depression Stops You In Your Tracks

Ok people, my body is forcing me to be pro-active, and to be honest with you, I haven’t been pro-active at all this past year. I was so sick last night that when I  woke up this morning I was surprised that I woke up. I actually had a moment of wow-I’m here.  My body has done some pretty crazy stuff to me and I don’t ever remember being surprised that I made it through the night.  When that’s your first thought in the morning it’s time to get off your ass and kick your depression and anxiety to the side and FIND A NEW DOCTOR.  I’m struggling with my depression and I’m at a place where I feel like ‘I just can’t’ and I’m intelligent enough to know that my brain is making me feel this way.

I’ll tell you a little story about the reason I haven’t gotten a new primary care doc in the last 5 months.
[side note: my rheumatologist and neurologist are amazing.]

My father fell and broke his hip last November. He was 82. Everyone at the hospital told us that all of his breathing issues were due to that trauma of the break. Before he fell, he didn’t have any breathing problems or any other physical problems, just the Alzheimer’s. We had to wait a couple of days because he wasn’t stable enough to survive the surgery. His DNR stated ‘use all measures to sustain life’ so of course we opted to get the hip surgery done. One doc told us we could not have it done and I thought that was the craziest thing I’d ever heard. He suffered those 2 days with excruciating pain all the while looking into my eyes and mouthing words ‘help me’ under the Bi-Pap in sheer terror. My father had late stage Alzheimers. He didn’t know who I was. He had the surgery and the surgeons were blown away by how well it had gone. I told them my father is a fighter, and tough as hell. Of course it went really well. I had my proud daughter thinking cap on. Things went down hill again and he was moved to ICU and vented. We had many doctors, nurses, specialists tell us that he wasn’t going to make it and that the vent would probably not be able to come out. And it did. He made it off the vent. He made it up to Intermediary Care ward and was on a Bi-PAP. With the Bi-PAP on he still wasn’t getting good oxygen levels. He was suffering.
After 2 and a half weeks we had to decide to take it off. By now, he wasn’t opening his eyes anymore. I sat next to him and prayed the rosary for him, told him not to be afraid as he is going home to be with his family, and talked about our times together. The nurses were surprised that he was still with us on this earth and his vitals even looked good. I was hurting and told the nurse I was going to lay on the window seat, facing him and she said she’d monitor the vitals behind the desk and let me know when he was close. In all of my 45 years I have never felt so guilty for having to lay down my body during my dad’s time of death. I watched his face. He looked so peaceful and I could hear his breathing. I closed my eyes for a second and I felt like a pop in the air, I felt it on my chest. When I opened my eyes I saw this dark smoke ? waft it’s way out of my dad’s nose and it pooled in front of his face. I screamed out to my partner What the hell is that?? and the nurse ran in the room and screamed ‘you better say goodbye to your father now!!!’ I jumped off the seat and ran to him screaming I love you dad I love you dad! And he was gone. The nurse said his vitals were ok then they just dropped like incredibly fast. Someone told me he waited for me to close my eyes so I wouldn’t have to see him die.

At about the time my dad was put back on the CPAP and we were told by 4 different docs that he wasn’t going to live, and that basically we were keeping him breathing for us. That we needed to decide because that breather was keeping him alive and maybe we were being selfish. In different wording, not that harshly. It was about then that my doctor refused to fill my zoloft. Refused. I had been on it for 10 years, I have depression and have since I can remember. I was at the hospital, praying and sleeping there and couldn’t believe she wouldn’t refill it. We came home to shower and I called and her assistant said she hadn’t refilled it in a year. I was speechless, I was holding the bottle in my hand and it very clearly had her name on it, along with the last years worth of bottles as well. So, we called the pharmacy. It was a pharmacy mistake. When they got a denial to fill A YEAR BEFORE from her they sent it to my old doc without telling me and he filled it. And continued to do so for a year!! The pharmacist called my doc to explain it and I did as well and she stood firm and said. No. I will not refill your zoloft. Not even a months worth so I could find a doc who would actually treat a woman with depression with the meds that keep her head above water. I had one one day and the next nothing. I spent the last week of my dad’s life going crazy in my head with grief, and my brain chemistry was out of whack after not having zoloft for a decade.

It’s safe to say that I am clinically depressed and receiving no medication for it. It’s also safe to say that I have this weird fear? to get a new doc. I don’t know what it is. I haven’t been able to go and get a new primary care doc. There was something that happened to me the year before that just shut me down completely, when it comes to doctors. It took sheer determination to find this one, the one that wouldn’t refill my zoloft. And now I feel defeated. And I can’t be. Something is going on in my stomach that will probably require surgery to fix, so says the ER doc, and I knew way back in the 90’s that one day I might need the surgery.

I’m struggling today. I’m in lots of pain in my stomach and really have to get my head together and start looking for a new primary care. I’m promising myself I will this week.

 

The Positive Aspects of Chronic Illness… with a side of Poetry

The Positive Aspects of Chronic Illness… with a side of Poetry

Friendship, support, laughter, tears, empathy, encouragement, pumped-up, sometimes chided, love, celebrating, stories, mental hugs, strength, me too!s, vent sessions, pre-approved pity parties. This list could go on and on and you know what? I should make a complete list, as if it could ever be complete, a list of everything that I have gained in my life since I ‘lost’ my health.

I’ve had a few people ask me what, if any, good things have I gotten out of this whole chronic-life experience and I don’t even have to dig around to find one. The people. The women and men that I’ve met since 2006 are amazing. Amazing! The most understanding, giving people I’ve ever had the pleasure to have known. Somewhere in the mix I have become a better person myself. I wasn’t so bad to begin with (tooting own horn here) but I really feel that I have become a better person by going through this whole process.

Tolerance. I have so many friends now who are different than me.  We tend to gravitate to people who are ‘like’ us. People that we meet in our lives, say through work or friends, we make friends with the ones who are most like us. Politics, religion, city or country, rock or soul, baseball or football, coke or pepsi. It’s just the way it is. That seems kind of silly right? But it really is how we find our mates in life and the people that we trust the most.  When you have a large group of people with the one thing in common that is so extreme; disease and suffering, all of those other factors just drop off. We get to learn about people who are different than ourselves. I’ve learned that I STILL love some people after having to endure the political onslaught that rolled down my newfeed pre-election. HAHAHA oh my. You know who you are 🙂 Just using politics as an example, in the ‘real world’ i.e. pre-sickness, I probably wouldn’t sit down with someone with a zest for politics at the cafeteria at work because, hey, I would have to smile and nod while thinking ‘are you kidding me?’ And you can’t really start a friendship when you don’t have that common interest. Here’s where it gets good. When disease is the common interest, we learn to support, empathize, and build each other up for those really hard times. All of the other stuff falls off to the side and we get to know someone we might not have otherwise. Bonus! How lucky are we??? And what a way to be able to see people as a whole. Tolerance. It’s a good thing!

Third: understanding people better. I think that because of our loss, we gain a better understanding of all people. Our families that have to put up with a non-stop barrage of doctors visits, stuck in the bed times, seeing us at our base; worst and broken, fearing for our lives when we are in the hospital fighting for them. When you first get sick you think it’s all about you. Soon you realize it is far reaching and affects everyone who loves you. I can forgive myself now for being sick as it’s not a punishment. I can forgive my people who at times have been cruel though only through ignorance, and that went away pretty quickly as everyone wanted to learn all about the disease and what they couldn’t grasp on paper they got to witness first hand with someone they love. Love is the word that keeps popping up and man am I loved. And I love so strongly now, how could there have ever been another way??

=============================================================================

OK, I want to share with you someone I met the other day. She has RA (rheumatoid arthritis) and writes the most awesome poems about her experiences. I sent her a message and asked if I could share one here and she said, yes! She is a very cool woman who I’ve no doubt that we will know each other for quite a while. You can just tell when you talk to someone that you will be friends, but instead of shrieking that out like the child that you are (meeeeee) you play it cool and use your big person voice and whatever social skills you have learned thus far. 🙂 Don’t be afraid Donna, I’m not a creeper or a stalker. he he he he

Here’s a poem that I loved, and felt it. And am going to share it with you.

Giggles Over Tears With RA

 

Sometimes I just want to turn RA off for a while,
One little switch could make me smile.
There are other things I need to do,
And other people who need me too.
I’d produce these switches and give them away,
To anyone suffering in any way.
Just turn off all pain and flip happiness on.
It’s my perfect invention that can’t go wrong.

Check out her page on Facebook

just click the link below

Giggles over Tears with RA

 

Today Is World Arthritis Day, Let’s See Your Wave!

Today Is World Arthritis Day, Let’s See Your Wave!

Hey all, today is World Arthritis Day. A day of awareness for people with rheumatic disease. There are more than 200 rheumatic and musculoskeletal diseases (RMD’s). This year’s theme is ‘Move to Improve’. 

You can click on the pic above and also the globe in the sidebar and be taken to the World Arthritis Day website. There you can find out more about today, get resources for yourself or to educate your loved ones, and have an opportunity to wave for WAD!  You can submit your picture of you waving for World Arthritis Day. The photos are being put into a montage and the goal this year is 100,000 pictures. Countries are competing to see who has the most waves. =) You can see the tallies at the website.

I think this is a fun idea and we’ll be ‘waving’ here and sending ours in. I’ll be sure to post it here when we do. They’re accepting photos until October 31st, so it’s not too late to be involved.  Anyone can wave; you don’t have to have a disease, you can wave to support your friend or family member.

Waving is a small physical activity, but a big gesture for people with rheumatic disease.  It also ties in with this year’s theme which is movement, and we all know this is SO important. Now that doesn’t mean running a marathon, unless you can and um, like to run…That’s just something I never did enjoy even when my muscles were my own. But light exercise is very important to keep your muscles from atrophying.

My mantra is ‘baby steps, baby steps’. There was a time when I couldn’t walk more than a few feet, and even then had to rely on a walker. The couple of years of me being immobile really did a number on my muscles. My disease is a muscle-wasting disease to begin with, so I really need to stay as active as I can. Something I have not been so successful with lately btw, but that’s the good thing about a new day. A day to try again.

Stop in at the website. Click the counter to ‘wave’ in spirit. Let me know in the comments if you did, I’d love to see them!

Until next time,

 

 

Videos on Dermatomyositis; The Good, The Bad, and The Ugly

Videos on Dermatomyositis; The Good, The Bad, and The Ugly


I’m cruising You Tube looking for videos to update the awareness videos on the sidebar here. The first video that pops up when searching ‘dermatomyositis’ is the same one that popped up I don’t know how many years ago. I got frustrated when I viewed it now, just like I did when I viewed it a few years ago. If I was a person to rely on one You Tube video I’d be severely misinformed. That’s the ONLY thing that saves me from blowing a blood vessel; knowing that most people will keep searching and reading to find out about something that they’re interested in.

She describes it to feel like ‘a mild flu’, oh brother to that one. Then, the interviewer asks her about the outcome and she paints such a rosy picture! She says ‘it’s usually about 2 years for the complete treatment of dermatomyositis’…whaaaa??? I want to go to wherever she’s at…she also says in most cases after putting it into a ‘quiet state’, which would be remission, it doesn’t usually come back. Again, where is she getting this from? Periods of remission may happen, they may not. There’s no ‘usually’ or ‘mostly’ as to it staying gone…sigh. I’m not trying to ‘fatal-ize’ this disease, I only wish that people in places of authority would state the facts. It’s irresponsible not to.

We need a cure. We need research, and research funding. We need enough people to care about a disease that’s rare. It still affects people, it still disables people, and it still kills people. People with DM are at a higher risk for developing certain cancers; cervix, lungs, pancreas, breasts, ovaries, and gastrointestinal tract. [mayo clinic] Interstitial lung disease is seen in 20 to 80% of patients with DM, depending on many different factors, with ILD being a major cause of morbidity and mortality. [ILD in DM and PM]

Here’s a really good informative video. It’s definitely not ‘user friendly’; it’s a technical video for teaching purposes. Lots of facts though. But still, if you’re not up on your medical terminology you might miss a lot of good info.

I’m still on a mission to find some informative, short, layman-speak vids. I might end up making some. We’ll see. 🙂

 

 

Please Stop The Pain For Chronic/Intractable Pain Sufferers

Please Stop The Pain For Chronic/Intractable Pain Sufferers

I know, I’ve been invisible for quite a while now.. Still battling depression, it’s an ongoing thing. I need to get back ‘out there’ and posting is one of the things I need to do to feel good. I have a list of people I need to call/write/hug, and a house to clean, ha!
In an effort to get back into the swing of things, I joined a fantastic site called Chronic Intractable Pain and You. It is an amazing source of support, and a place for advocacy for chronic pain sufferers. I’m going to make this post short and sweet, and place a link to sign a petition. Please at least check it out, read it and if you agree, please sign. We need 10,000 signatures and are at around 900.
Thanks in advance, and I will be back!

Please click on the picture below to take you to the petition =)

Make a wish!
Counting my blessings

Counting my blessings

I love this shot.  I really kicked up the contrast and colors, but even with no touch up, it is a pretty flower.  These past few months for us as a family have been extremely challenging.  Lot’s of illness, family issues, money, surgeries, pain, I need to come back to simple to get through all of this.  As usual my Big C is amazing, incredibly helpful, he is my biggest fan.  I’m his although he says he loves me more.  pffff, haha.

I’m recovering from one of the worst intestinal bugs I’ve ever had.  It’s been about 2 weeks and I’m FINALLY starting to be able to keep food down.  Well, I lost weight!!  I’ve been stuck at a certain weight for 3 months now and this illness got me down 14 pounds, woot! I wouldn’t recommend the ‘barf and poop off the pounds plan’ but I got it for free so I’ll take it.  🙂  I went through a high fever and much pain and my mind would roll and roll whether I was awake or not.  I remember thinking, Is pain an emotion?  At time when the pain and sickness is so bad that I don’t think I can do it for one more minute-I can feel the depression like a physical pain. And when my body starts to heal of course the cloud gets lifted and even the pain doesn’t feel so bad.  You’ll have to excuse my ‘whoooaaaa’ little epiphanies, my brain is running behind a little bit.  I’m taking it minute by minute and getting back to simple. Family, flowers, all the things that make you smile.

OK. I’m coming back. Again.

until next time

Dark Day

Dark Day

I woke up this morning just feeling the depression before I even had my eyes open all the way. I’ve been battling it for weeks now, but today is/was different. I felt like I’d already lost the battle and I hadn’t even gotten out of bed. I know this is a chemical thing, and I also know it is very selfish of me to entertain it, I just feel powerless today. My pain is very high. I feel poison running through my veins. It’s the only way to describe this feeling; I can feel it running through my veins. I’m itchy. I’m restless. I’m a mess.

I have so many things to be thankful for, and to be grateful for. My family. Are. Amazing. My partner in this life is a saint to be putting up with even a fraction of all the shit I seem to be throwing around lately. He is my heart, my reason. The Bean is amazing as always. I feel the most guilt over her. I feel like I am not giving her what she needs. I’m always sick. I imagine us going to the library, to the park, heck, even just to the store. But ‘Gramma is sick’ is what she hears. Big C corrects me and shows me just how happy she is. My mother is always there for me and Bean. She takes her to the park the library, the mall. I am forever grateful.

I thought if I sat down and tried to put into words what is making me itch, causing me pain that i would feel better. I think the only way I’m going to feel better is to consciously choose to be happy. That sounds so simple. And impossible today. Is this depression? Or is it guilt. I feel so guilty for being sick all the time.

Mish-Mash Friday with a little bit a dis and a little bit a dat

Mish-Mash Friday with a little bit a dis and a little bit a dat

I get the weirdest spam on this blog. There’s tons that are just gobbledy-gook like a cat ran down the keyboard and here in there in the mix are some smut words. Other times there is a paragraph of nonsense. Makes me laugh as I go through them. Here’s one

I’ve been searching for some time for one high-quality content articles with regards to this unique topic . Doing research in Yahoo I lastly encountered this site. After reading this post So i’m glad to pronounce that I get a wonderful impression I came across whatever I was looking for. For certain i will ensure to don’t forget this website and visit consistently.

It reminds me of grade school when the teachers gave you your first ‘real’ writing assignment and it has to be x amount of words. Lookout thesaurus! I’m gonna throw in as many descriptive words as I can get away with for describing the waters George Washington was crossing.  A for effort to the spammer above, although it was probably just computer generated.

Pretty sky shot gone 'wrong' after post-editing..bwaha ha ha ha!
The Heavens

Life is still the same as it’s been all Summer, except now it’s Fall. I’ve been battling depression and trying to fake it ’til I make it.  It a motto Big C and I stand by and I try really hard. But lately, I’ve been mopey.  I had my infusions last week.  My ‘head pain’ came back and my rheumy threatened to pull the plug. I whipped on my shades and then proceeded to cry like a baby in front of all the other infusees.  He said it was too dangerous, chance of me having a stroke. Huh? I sure didn’t read that anywhere. So C and I pretty much begged. The infusion nurses, who btw are saints, suggested I take an oral toradol added to my pre-meds, and then IV toradol at the end of the day.  This being what stopped my head from exploding in the ER the month before. He agreed and put it the order and the next morning I showed up just praying, praying for no pressure that ultimately turns into the head pain. I took my pre-meds, tylenol, benadryl, and toradol along with my regular pain meds and sat back in the chair and prayed.  The infusion nurse chatted as she hooked up my IV and I prayed silently some more. Well, before they hang the bag of immunoglobulins, they hang a bag of solu-medrol as part of my pre-med package. It’s like liquid prednisone (yuck) I feel fatter just thinking about it. Anyway, as soon as the drip started my head started to swell with incredible pressure. It’s the solu-medrol not the IVIG!! I was so happy!! I can continue with the infusions! And that’s when I found out my rheumy decreased my dose this time as a precaution. He told me it’s the least amount he could give me without stepping in to the non-therapeutic range.  Well-it’s been over a week, and I’m not feeling better like I did last time.  I was SO looking forward to that well-floating-in-a-cloud-back-to-healthy-feeling.  It’s not coming and I’ve got the pity party blues.

I’ve got to get into the shower, pull up my bootstraps and fake it ’til I make it. Woot!  Or, I could stay in bed and scrap. That sounds good too. I’ve got tons of new graphics just waiting to be pieced together around my beautiful family.  I’m thinking I’m going to choose the latter. As a matter of face, I already chose =)

Until next time

Picture above: I got that shot on the way to the hospital’s infusion center in a moving car. It came out pretty good considering, but I tossed it into Picnik and did some heavy duty editing with all the goodies they have.  =)

Cure JM a finalist! 250,000 for research!!!!

Cure JM a finalist! 250,000 for research!!!!

I just wanted to drop a quick THANK YOU for all of you out there who diligently texted and facebooked and on-site voted for Cure JM to win in the Pepsi Refresh Challenge.  Oh my gosh, I still can’t believe we won!!!!!  It’s amazing, wonderful, incredible, and oh so needed! Thank you. All the children with JM have some more hope for a cure with the 250,000 prize money to go towards research.

Love to you all,

%d bloggers like this: