Radio Silence

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I realize things have been quiet around here for quite awhile now and truthfully I’ve been struggling. In addition to the multiple physical illnesses I live with I also live with generalized anxiety and depression. It should be no surprise that someone who lives with chronic pain and illness gets anxious and depressed from time to time. This past year has been filled with hospitalizations, medication changes, procedures, and surgeries all in search of answers and solutions to the problems that plague me. Unfortunately not much progress has been made. This winter marked a decided low point in my treatment plan. At the beginning of October I had a J-tube placed and have since been utilizing it as my primary source of nutrition. I struggled for months to get the feeds under control. There was a significant disconnect and lack of communication between the surgeon who placed the tube and my gastroenterologist. Nobody seemed to know how to manage my tube long term and I was left with no support, floundering and searching for help on my own. After a lot of back and forth between doctors, insurance, and more doctors I finally found a nutritionist capable of putting together a treatment plan that was appropriate for my illnesses and my GI agreed to maintain. A mere seven months later and things were finally situated! No biggie, I just wasn’t able to eat but whatever. (Can you feel the sarcasm??)

 

So, fast forward to today, my current situation is a bit complicated, I continue to struggle with pain management and nutrition. Even though my health is wildly unpredictable and I physically am feeling generally lousy, my mindset is a bit better than it has been. Better weather, sunshine, and finally having some nutrition in my body makes a big difference. I will share more about where I stand medically in another post but for now know that I am here, I am trying, and I just keep on keepin’ on as they say. 🙂

Sending much love and gentle hugs to my fellow spoonies and spoonie supporters

xxoo Spoonie Mama

Dear Mr. Cruz

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Dear Mr. Cruz
I realize the campaign trail is a long and arduous journey and you are fatigued yet determined to see your campaign through to the White House. Campaigns are notorious for promises made and not carried through to fruition. I realize many things of which you speak are well intentioned and some others may be an attempt for appeasement and the gathering of support. However, one of your recent promises really struck a chord with me and I am writing to you in the hopes of determining  your commitment to this issue.
According to the Huffington Post on 2/18/16 while presenting to military voters in South Carolina, you implied that you would “wipe out cases of ‘political correctness’ in order to spend resources on building a stronger military. Cases of ‘political correctness’ include equipping the military with dietary options for those who suffer from gastrointestinal disorders like celiac disease.”
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Image via TedCruz.org
This is where I am concerned. Do you truly believe people suffering from the autoimmune condition of celiac disease are doing so to be “politically correct”? Do you believe these people don’t consume gluten to be trendy? Do you recognize celiac disease as a true illness which requires patients to limit or completely restrict their consumption of gluten? If you recognize this disease and its presence then do you believe not one member of the military suffers from this illness? 1 in 100 people in our country lives with celiac disease and a good statistics teacher would tell you that inevitable some of those people serve in our military.
Do you know what happens if a person with celiac disease consumes gluten? Let me paint a picture of reality for you. A person with celiac who consumes gluten can suffer from severe vomiting and diarrhea which can lead to dehydration and in many cases hospitalization. Severe abdominal pain and cramping are inevitable as well. According to the Celiac Disease Foundation more serious complications can occur as well such as type 1 diabetes, infertility, miscarriage, intestinal cancers, and neurological conditions.
As a person who lives with such a disease I can say that while I am experiencing a flare up of my condition it is nearly impossible for me to be a functioning member of society. Do you think our military members can fulfill their duties while dealing with such symptoms? Do you think that by not providing a gluten-free meal option you are setting these men and women up for success? If they are forced to consume gluten as no other options would be available it would be near impossible for these people to carry out their duties they swore to uphold.

Your statement demonstrates an ignorance that people with such diseases face on a regular basis. My hope is that you will educate yourself and realize that there is far more at stake here than political correctness. Peoples’ lives and well being are what will truly suffer if you follow through on this campaign promise.For more information and your own education please visit the Celiac Disease Foundation at celiac.org


image via Facebook.com

How “The Real Housewives of Beverly Hills” is Hurting Spoonies Like Me

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Let me start by saying that I have been a fan of this franchise from the very beginning of the OC edition. I have often called it my guilty pleasure and a show that I’m almost embarrassed to admit that I watch. But I follow many of the different franchises for different reasons and the Beverly Hills Housewives have always been a favorite of mine. 

As part of the storyline for this season Mrs. Yolanda Foster is documenting her daily battle with chronic illness. I applaud her for having the courage to take her very difficult fight public in such a revealing way. In the past her illness has been alluded to often with her cancelling plans at the last minute or not partaking in an activity due to fatigue. This season she is sharing more about the types of treatments she is working through and we are seeing more of her daily struggle in depth. 

  
(Photo credit Instagram @bravotv)

As a person who has struggled with chronic (and incurable) illness for the past seven years I can most certainly relate to Mrs. Foster’s situation and feel a great deal of empathy for her and for her family. Chronic illness is a difficult battle to face on your own and it can very easily tear a family to pieces. It does not just affect the one afflicted with the disease but directly impacts those family members who are closest. Your whole lifestyle has to change to accommodate your illness and therefore the lives of those closest to you are changed as well. It’s not easy. The illness of a loved one is one of the most difficult things a family has to deal with. I applaud Mrs. Foster’s courage to document her fight in such a public manner with the hope of raising awareness for her disease. 

Lest we forget that this is a reality series documenting the lives and interactions of six affluent women from Beverly Hills, a bit of drama must always be sprinkled throughout. This is where I fear the producers of this show may do the most damage. In just about every episode thus far this season there has been a storyline of the women in this group expressing doubt of Mrs. Foster’s illness. Lots of questions have been asked by these ladies but none of which have been answered by anyone with specific knowledge of the patient and the disease. The ladies have speculated every scenario from, doubting her illness altogether to questioning her treatments and medical specialists. The idea that this might all be “in her head” was even entertained. These conversations have been given a lot of screen time by the producers and then always are followed up with blog posts from the wives as well as rehashed on after shows and other news outlets. 

I am a very sick person who often looks completely healthy (we are often referred to as spoonies). But I’m not. I’m as far from perfectly healthy as I’ve ever been. While I do not share the same specific diagnosis as Mrs. Foster, we fight very similar fights. Every day when we wake up we have to make choices and be very selective about where we should expend our energy. The fact that you are giving so much attention to the doubt that Mrs. Foster’s “friends” have about her illness is damaging to those of us with chronic illnesses. We are constantly bombarded with doubt, with condemnation, and with suspicion. This comes at us from every angle; family, friends, coworkers, medical professionals, pharmacists, and even new acquaintances. Often fighting and educating against the doubt and misinformed is just as, if not more, draining than fighting the diseases that plague our bodies. 

While Mrs. Foster is taking the brave step to fight her illness in the public eye the production of this show is casting her in a negative light by focusing on the doubt and conspiracy theories being whispered amongst her friends. Through this platform the producers have an amazing opportunity to educate and enlighten the general population. As a spoonie you can sometimes get up and out of bed and take a “smiling selfie” and then there are other times when you barely have the energy to change from sweatpants to clean sweatpants. Sometimes you can get up and out of the house for a social event but then spend the next three days in bed recouperating. Every one has good days and bad days and those who are chronically ill are like that as well. We have good days and bad days, though often the bad out weigh the good. 

I would like to encourage the producers and the cast to use this media platform that has been created to cast Mrs. Foster and her disease in a brighter light. One that demonstrates the ways her friends and those close to her could be of help as opposed to constantly casting her in a shroud of doubt. One of the most difficult things to deal with when you’re chronically ill is the ignorance and the dismissal of your condition of you don’t “look sick.” 

We wake up every day and we fight. Sometimes we have to stay in bed to fight and other days we can get out into the world but it’s always a fight. The worst is when you also have to fight with those closest to you just to get some love and support. It’s bad enough when we have to fight for the public to understand our illnesses and daily struggles but when it comes from close friends and family it really hurts. By choosing to highlight the doubt Mrs. Foster’s friends have about her disease in turn the producers are making it that much harder for the rest of us to get the love and support we need. Someone looks at this show and sees that Mrs. Foster’s friends don’t even think she’s sick so how could I or any other spoonie possibly be sick either. 

Thankfully this show is not the end all, be all of our community of spoonies. We will all continue to get up every day and fight. Yolanda Foster, we welcome you to our spoonie community with open arms of love, support, and understanding. I pray that you surround yourself with those who can lift you up and carry you through your journey with chronic illness and let go of those who cast darkness and doubt.

Something to Celebrate

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Seven days ago I started a personal improvement challenge and I am so very proud of myself for keeping it up consistently to this point. It also means that this acute episode got seriously serious a week ago but that’s a topic for a whole other post entirely. 

I’m still spoonless so this will be short and sweet. 

  
Today I am grateful for:

  • The safe arrival of my Belly Buddy’s second baby. Our toddlers are exactly one week apart in age and now she has two under two. She’s a rockstar and I’m so thankful to have her and her family in my life. 
  • The fact that it didn’t rain here until dinner time. BooBoo needs fresh air everyday and to go without makes life very difficult. Today he got to go for a walk with Gramma and it was a big help. 
  • Mom friends. They just “get it” it’s like a sisterhood and I’m proud to be part of it. 

I have continued with the technological random acts of kindness via text and email since I still haven’t left my house. 

This challenge has certainly helped shape my attitude for the better during this flare up. Husby keeps commenting on how upbeat I’ve been despite feeling incredibly ill and taking the time to quiet my mind every day and give thanks for what I have is definitely the source of a more positive attitude. I’m not going to lie, this is still a very difficult thing to deal with but taking the time to express gratitude is a game changer. 

 

5-3-1 Challenge Update 

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The timing of this personal challenge could not be any more beneficial than it already has been. I started this self improvement project not knowing that I was coming upon an acute episode of pancreatitis. For the last six days managing my disease has been very difficult, bordering on impossible. The daily meditation and recognition of gratitude has been a great help in keeping myself centered. I saw my therapist today and she commented on the fact that I didn’t seem stressed. I told her that I’ve been making a conscious effort to focus only on the things which I can control. It’s not easy but I’m definitely trying to let go of the things beyond the realm of my control. 

Today I am grateful for:

  • My GI doctor and his assistant for working hard to get me the help I need
  • BooBoo’s babysitter. She came early and stayed late today with zero advance notice. That type of flexibility in a support person is invaluable. 
  • BooBoo sleeping in until eight AND taking a three hour nap!

Today I meditated on my own and am definitely starting to get more out of it. I remember hearing from the woman who did my reiki treatments that your mind can wander to other thoughts while meditating. The important thing is to bring yourself back to center and end in a calm frame of mind. 

My random act of kindness was bringing in a package for a neighbor. I’m really going to miss some of the neighbors we have here. 

Are you taking the challenge? Have you started to notice any changes in your daily mood or stress levels?

The One With The FRIENDS Analogy

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Those who know me know my love for the hit 90s sitcom FRIENDS. I can recite almost any, ok probably all, of the episodes by heart and can relate many life moments to something that happened to one of the characters. My high school bestie and I watched the entire series religiously and after we went off to college had many phone calls at 8:31pm on Thursday nights to rehash the new episodes. I have many fond memories tied to the series and can remember exactly where I was in life when milestone moments happened to those six New Yorkers. The series finale was the end of an era! So please, bear with me a moment, while I take you on a trip down memory lane. 

Remember the episode where Phoebe and Mike breakup? It’s season nine episode seventeen The One With The Memorial Service 😊 In that episode, after breaking up with her boyfriend, Phoebe enters the coffee house and sits down and tells Monica and Chandler that usually when she’s sad she writes a song about it but there is nothing that rhymes with, and then she makes this horribly strained, sad, groaning noise. That! Right there! That is how I’m feeling today. 

  
Source: friends.wikia.com

(OK, I realize that was a bit of a stretch but it is the only thing I could come up with.) 

Anywho, today I want to crawl into a hole and die. Ok, I don’t really mean die so all you mandated reporters out there can cool your jets. I’m exaggerating the whole wanting to die part but I’m reaching the end of my rope. And as a spoonie (not to mention a mother and former teacher) I have a pretty long rope for patience. 

The unfortunate thing is that there really isn’t anything I can do for relief unless I want to go to the Emergency Room. Have you ever gone to the ER? Have you ever gone to the ER as a person with an invisible illness? It’s usually not a positive experience. My last ER visit and subsequent hospitalization was in March of this year and was by far the most unpleasant stay I’ve had.

I felt like no one believed me. Doctors and specialists, no one took me seriously. I could not get in touch with my GI doctor and was only able to see the on call physician and PA from his office. It was a terrible feeling that I wasn’t supported so I asked to be discharged and I went home. It was awful. 

Tomorrow I will call my doctor and see what he recommends but for now I will continue to cower in the fetal position and try not to lose my mind. 

  
Today I am grateful for:

  • Husby (I know he’s on the list a lot but he’s pretty important) Today he took BooBoo out all day so I could rest. I missed them both like crazy and wish we could spend our weekends together but for right now, it is what it is. 
  • Old musicals like Hello Dolly and Singing in the Rain, these are my comfort movies when I’m not feeling well. They really help. 
  • My Soul Sister. She’s the only one who truly gets how horrible this disease is and today she made me laugh until I cried. Thanks sistah 😉

A random act of kindness was not easy to accomplish since I didn’t leave the house but I did reach out via text to a friend going though a tough time. I hope it helped brighten her day. 

Today I meditated quietly on my own. It was much easier to do this time and I didn’t have to spend as much time trying to quiet my mind as the last time. I don’t know if I did a whole 5 minutes or not but I don’t think the quantity of time is as important as the quality. 

So, that’s all I can get through for now. Please pray that my doctor has some amazingly fabulous idea tomorrow to make this all better. 

Spoonless

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Today I am a woman without a spoon. A spoon, a spoon, my kingdom for a spoon! Nope, not a spoon in sight. Things are not looking any better or brighter. 

Let’s get right to it  

 
Today I am grateful for:

  • Family
  • Pain killers
  • Blackout curtains 

My random act of kindness today was sending a fun gift to my bestie who is having a baby soon. 

Today I used the meditation from the TODAY.com website and it put me to sleep but that’s because I’m spoonless. I guess that means it worked?

  
Today I am not able to adult at all. Thank goodness for family, my inlaws took BooBoo for the day so Husby could get some packing and moving accomplished and I could play dead. 

I’m not feeling better, I don’t know what to do. My number one priority is to avoid hospitalization so I will be calling my GI doctor first thing Monday morning to make a plan of action but until then, I’m on my own. I need to do a better job of communicating what I need to Husby but I often don’t even know what I need myself. 

Being spoonless is like being a man without a country. I feel totally lost and don’t know how to help myself and that makes it difficult to communicate with others what I need. I appreciate when people offer help but it is difficult to accept at times. I feel selfish and like I’m an inconvenience to others. It’s a continual process with a steep learning curve to which we all have to adapt. 

We Can Do Hard Things

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There are a lot of bloggers out there in the vast landscape of the Internet and over the last two years (since becoming a mom)  I’ve discovered the world of Mom Bloggers. There’s posts about everything from breastfeeding, to cloth diapering, to educational activities, and kid friendly recipes. There’s a lot of great resources out there for parents and a lot of support too.

One of the bloggers I’ve loved following is Glennon Doyle Melton of Momastary. She’s amazingly real with her readers and so relatable. All of those “holy sh*t” moments you experience and then wonder if you’re the only one, she’s written about them. I read her book Carry on Warrior when I was starting on an upswing after struggling mightily with postpartum depression and a major acute episode of pancreatitis. This was the first book I had read in almost a year and it spoke to me. I call Glennon my friend even though we’ve never met and speak of her like she’s family. I feel a connection to her because she has been so open with her readers and addressed so many of the things I have experienced in the past and was dealing with at the time I read her book. All of those feelings that you have and think no one else has experienced and no one else understands, G understands, she’s been there and she is brave enough to share it so that the rest of us don’t feel alone.

One of her mantras is “we can do hard things” and today I really needed to remember that.


I’m not physically feeling any better than I did before I went in for a treatment yesterday and that is widely frustrating. I’m ready to be better and get back to life. Today was a day I needed to be in bed and not adult (yes I am using “adult” as a verb). The plan was for Husby to come home a little early and take BooBoo to the new house and get some things done.

A little backstory: we bought a house, it needs some work, we’re moving in two weeks. Ok now you’re caught up!

Husby called and said there was an emergency at work and he couldn’t make it to the house to meet the contractor he had scheduled. He said, “I need you to be at the house.” My first thought, “I can’t do this, it’s too hard!” My second thought, “I can do hard things and my husband who is my biggest supporter needs me.” So I went and I did. It was hard. But I did it because I can do hard things. Thanks G, don’t know what I’d do without you.


Today I am grateful for:

  • G and her guidance and positivity
  • A happy little boy who rolls with the punches like no other.
  • Leftovers. I had the energy to cook earlier this week and so I have fed my family for two nights on leftovers. God bless the microwave.

My random act of kindness was a little challenging today because I didn’t really leave the house but I sent a couple of messages and texts to a few friends who needed a little lift.

Today I meditated on my own for the first time. It was not as successful as when I use the guided meditations but it was five minutes of stillness. I’m still learning how to quiet my mind as much as my body but realize this is a process and there’s a bit of a learning curve. I’ll get there!
For now I’ll leave you with this awesome picture of BooBoo mowing the raspberry pink carpet in our new house. This kid really brightens our world.

No One Told You Life Was Gonna Be This Way

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Here we are again, curled up into a ball and typing with my thumbs because I’m in too much pain to sit at the computer. I guess downloading the Word Press app was worthwhile after all, I’m using it far more than I anticipated. It’s amazing how many spoons it takes to sit at the computer and type but I digress. 

I’ve been experiencing a bit of a flare up this past week so today I went into the hospital infusion center for IV fluids. The last time I saw my GI doctor we decided that this would be the plan; as soon as I start feeling more poorly than usual he will bring me in for fluids to hopefully stave off an acute episode. He pumped me full of fluids and now I’ve blown up like the Stay Puffed Marshmallow Man but fingers crossed I can ride this out at home. 

  
I’m running pretty close to empty but I’m committed to my 5-3-1 challenge and used my time at the hospital today to meditate. I found this to be very helpful while in the midst of the hustle and bustle of the infusion center and today I used a guided meditation called Beyond Pain from Meditation Oasis by Mary and Richard Maddux. This was a really great one for my personal circumstances and I highly recommend it for my fellow spoonies. 

My random act of kindness was for the nurse who cared for me while at the hospital. I left an anonymous comment for her supervisor praising her kindness and skills as well as those of the other nurses and staff I dealt with today. They are all so fabulous and I hope that getting some positive feedback brightens their day and helps them realize just how appreciated and important they are in their patients’ lives. 

Today I am grateful for:

  • Netflix; being able to binge watch episodes of FRIENDS really helped to pass the time today
  • My girlfriends who texted with me and kept me smiling while dealing with this not so pleasant illness
  • Husby, he keeps me going

  
What is keeping you going today? 

5-3-1 Challenge: Day One

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Yesterday I was feeling super motivated to start this challenge, but today was another story. I woke up with more intense pain and symptoms and really wanted to curl into a ball and hide all day. Luckily, I had a doctor’s appointment so that forced me out of bed. After I got home and got BooBoo down for his nap I laid down to do some guided meditation. Today I used a podcast called Sunset Dream by Lita Stone which was about ten minutes long. I definitely felt good afterwards. Next, I focused my energy on an act of kindness. My inlaws were coming over to help me with BooBoo and so I made my father in law’s favorite dinner as a thank you. It took more spoons than I would have usually spent on making dinner but I knew it was something that would make him happy and they are so helpful with BooBoo when I’m struggling with my symptoms. He was very appreciative and making him happy definitely made my heart happy. So now for the three things I am grateful for today;

  • Today I am grateful for a supportive and caring medical team. I have never felt like “just another patient” with any of my medical providers and on days like today that makes all the difference. Today I needed assistance to get some intervention before my symptoms become unmanageable and they made it happen.
  • Today I am grateful for the people who love me and my family enough to go out of their way to help when it’s needed. Today I did not have enough spoons to be Mama alone and needed help. Thankfully help was just a phone call away and both BooBoo and I got the support we needed.
  • Today I am grateful for air conditioning. The weather here was so hot and humid today and having air conditioning in my home made all the difference. The last thing I need to deal with when having a flare up is feeling hot and sticky. It may seem trivial but it is something I am grateful to have today.

When I woke up today I didn’t want to do this, but I did it and feel better for having accomplished day one of my personal challenge. If there is one thing chronic illness teaches you it’s that you have to take everything one step at a time.

How are you doing with the challenge? Share your progress in the comments!