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Gear for POTS & Chronic Migraine Pain

Because of my chronic monsters, the upcoming “Miracle Day”(aka wedding) will require some special technology. I’ve been prepping for about a year, and have done some research to quiet my critters. Would you like to see some of the gear I’ve found?

Even though I am still uncertain how my body will react at the wedding and how long all of my issues (see my about page for specifics) will allow me to stay at the ceremony, having this “armor” makes me feel more ready to attempt this ‘impossible’ feat. I know everything will be in the red zone, but my sister is counting on putting eyes on me when she is at the alter. She needs me there, so these little gadgets are going to add minutes to my miracle- and some extra minutes are all we need, baby! A good friend of mine thesickdiva blog said she’s praying my endorphin’s will kick in and I’ll be there for an hour instead. That would be amazing! Thank you, Jenny!

Ear plugs– I have so many different kinds. I usually use the soft foam kind for comfort. PS, these come in many sound-blocking capacities. But for this special occasion, I’ve purchased Decubulz which have the highest NRR available. I have yet to mold and fit them, which will take help, and boiling water, so we’ll see if they work as well as advertised. I’ll let you know how they work out.

HeadgearBose wireless sound canceling headset has been on my wishlist for a long time. They have been such a blessing since the holidays! (Thank you Aunt Darlene.) I don’t know how I ever lived without them. Before, I was using gunrange type headgear, and they were not only very tight and painful, but they didn’t offer much sound protection. The Bose are the best sound protection available, and much more comfortable resting on my neuropathic head and face. I like that I can wear them as needed, and then I can flip the switch on the side for the sound blocking feature before my head explodes. It helps turn down the pain and some of the fight or flight sensory overload symptoms. I wish it blocked out all sound, but they are a big improvement over any other headset I’ve tried.

Theraspecs Sunglasses– I did a great deal of research on migraine reducing shades before deciding. Many of my friends have prescription eye wear for light sensitivity, but a physically wearing trip to a new doctor plus lights being shone in my eyes for new specs was off the table for myself, though if you are reading this with headache disorders triggered by light, prescription shades is one of the options. I was relieved to find there are many kinds of shades to choose from. My friends said to look into Serengeti shades, sporting eyewear, and rose tinted lenses. I did. I soon found this company, Theraspecs, which was started by a woman whose severe migraines are brought on by light. She and her husband make lenses with several kinds of filters, (including FL41) and will even custom make your shades if you send in your favorite frames (winning!). Since getting mine from Theraspecs, I notice a big difference in screen brightness from my laptop, Kindle and phone. I’ve yet to try them outdoors, but I’ll be giving them a spin in a couple of evenings! My Aunt also got a pair of theraspecs custom made, so we will give you an update on head pain reduction. We were both very impressed with the level of communication from the company, and customer service.

Bride’s Maid Dress– We were told to pick our own dresses (with criteria). I absolutely love the one I found. As you can imagine, I have not purchased any (non-pajama) clothing for a very long time. I’m so excited to wear it! I haven’t worn makeup in quite a while, either and found some fab red lipstick that I hope will accentuate my pale…ehem porcelain complexion. (The sale price is not what I paid.) ASOS is one of my favorite online clothing shops for gifts and “lounge wear.” Here are one of my accessories that I’m excited about wearing as well; it’s both functional and fabulous. If anything else, I will be put-together on the outside! (wink)

Reclining Wheelchair– Such exciting news!!! Even though last week was one of the worst in a long time (that’s saying something folks!), this wheelchair was such an amazing gift to my life! I’m so stoked about this! Thank you for celebrating its arrival with me, and allowing me to share it with you all!!! My reclining wheelchair was not only approved by insurance, it was already delivered! Isn’t she pretty? We usually have to rent one, and now, we have one for keepsies. As I’ve shared here before, my Postural Othostatic Tachycardia Syndrome (POTS) only allows me to sit or stand upright for a couple short minutes before going into Pre-syncope (starting to get sick and pass out). But if I’m in a reclining position, my POTS will stay in check. That is a huge relief! If I am forced to be upright for more than I can tolerate, my health can go into a setback for a while. I know this wheelchair will be an awesome step forward on my journey, and hope it leads to great progression for my life! (If your insurance has not approved your chair, try Invacare on Ebay for new, inexpensive, high quality chairs with free shipping.)

Invacare-recliner

Hopes and Dreams on Wheels

Nurse/ home health aid– I’ve had a home health aid come every week for the last several months (game-changer), and she will be assisting me at the wedding. Because of her help, no one in my family will be distracted by me, and they can focus on my sister and the wonderful event! A great relief to both me and my sister. When I told my sister my aid would bring me to her wedding, I could tell it lifted a weight off of her shoulders. This newer aid has never taken me out of the house, so I admit that I am anxious about that. My ex-husband is really the only person who was fully aware of all of my transport issues and needs when we would attempt to go to doctor’s appointments. I’m putting a lot of trust in her professional ability and experience with other patients. She hasn’t failed me yet!

Blood pressure cuff– This is just my boring reliable old blood pressure cuff from Walgreens. We got it way back in 2011 when my one monster (RSD) invited a whole crew of critters to the party. I don’t sit around measuring my BP for kicks, but we’ll bring it along in the car just in case.

Though I wish I had a temperature controlled, sound-proof bubble I could participate in the wedding through, I can only prepare so much. We’ve been planning for over a year, I’ve been in physical therapy for months, and I have every item to make my body as cooperative as it will get. If I had not gone through all I did this past year, I don’t know if I would be ready for this day. That is a ray of sunshine coming through these clouds because I love my sister more than anything.

Just as my sister is planning all of the details to make the day as beautiful and memorable as possible, I’m planning for a smooth event as well. We can’t approach it with fear. No day is perfect, but how we enter into it mentally can change the memory completely. For me, the truth is that it will be painful and frightening. I will have to recover for a while afterward. If I can go to be present for their vows between 10-20 minutes, that would be so incredible! It will be a triumph and so precious to be there supporting my sister, her soon to be wife and our families.

I’m so honored and privileged to be her maid of honor. It has been a joy to contribute to her wedding in my own ways. I have some little surprises for her and her bride for the day of, which I’m getting excited for. It has been very difficult, sometimes heartbreaking (for both of us) not to be involved like I would be, like I SHOULD be. That river runs deep for us both, but more importantly, so does our relationship. For the ceremony, I don’t know if anything could stop me from being there in any way I could be. She is my heart. Of everything that has gone on in my own life in the last few years, wedding planning has been such a bright light I am so grateful to be included in. See you on the flip side! Thank you for rolling along with me.

I always thought that I’d see you again

So it has been 9 months since my husband and I parted ways. For us it was not a gradual thing. Well, maybe for him it was….

[I’m going to get through this without talking about his personal details.]

On my end, I knew he had been struggling all year, and I was trying to be uplifting. One day, I was texting him love messages, silly photos (which are now just embarrassing), funny videos, and anything to try to help him smile at work. The very next day, I was living at my parents’, confused, and unsure what happened the day before, or why.

I don’t remember much about that conversation after he got home. I do remember messaging a friend in a daze asking what I should take with me, and Google searching: “what do you take in case of a fire.”

In some ways, 9 months has flown by, and in other ways, it has dragged on much too slowly. It has felt impossible at times for my heart to catch up to all that has occurred, the choices that were no longer mine to make, the quickly unraveling dreams that were out of my control. I was often reminded that I had experience with surrendering, and making peace with pain, and could do it again if forced to. (I think people with disabilities are resilient in that way, and though it feels like every day is a fight, we learn adaptability which is a gift!) On the other hand, I felt continually impatient. If you have ever waited for test results that would almost surely come back with an outcome you don’t want to hear, something within you cannot help but crave the knowledge of it, no matter how bad. Almost like the tree of good and evil. Waiting was like an itch I couldn’t scratch. A part of me wanted to know my future in certain terms, and with immediacy. The rest of me was at peace to wait a lifetime in limbo, however impractical that would be.

That afternoon was our last conversation as husband and wife; I didn’t know it was goodbye at the time. You may remember, I wrote A Season of Waiting just after. Now you know the inspiration behind the message.

And while so many months can seem like a very long time, with a new life emerging beneath me, there are still huge landmines that explode in my face when I least expect it. Several exploded from the mail box right after breakfast this morning. It was a hard day, but not the first, not the last, and I’ve certainly not seen the last good day either. The “process” ended just last month, but THIS process is only beginning.

I’m trying to grow accustomed to managing life on my own. …Without having someone to share these pitfalls and triumphs with. Loss and heartbreak is certainly not new to humans; and I will adjust to it better and better. I confide in God, and it is incredibly humbling to share my worries with the creator of the universe.

I’m thankful to be ending my day with you, eating bacon and drinking chocolate coconut milk. (I get to eat that kind of thing, because I have POTS… at least that’s my story.) That IS my story… at least part of it.

Have a good night. And avoid those landmines.

New page, Disabled and Divorced

PS, Check out the counter for my sister’s wedding at the bottom of the page. Getting close!

 

Exposing Myself…

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You read my blog. And you might read my tweets. You might even know me on facebook or in a support group. But, chances are, you probably don’t know what has been going on in my life this past year. For the next month, I’m going to crack the lid off of my mess. For better or worse…

That last line is ironic for more than one reason.

My husband of 14 years divorced me just last month. And, my sister is about to get married this month. Oh, how the universe laughs at us!

What else? You probably know that I have had chronic pain for the last 11 years, and then 4, going on 5 years ago, I became bedbound due to a failed procedure causing several other chronic illnesses. I’ve had to fight for my life, my pain has been…I can’t find an adjective to describe this pain…and the illness I experience is like every part of my body is at war with itself.

What’s new with my health? I am in home physical therapy, I’ve hired a home care professional, and I believe I am beginning on a slow, steep path to “recovery.”

I haven’t been physically able to tolerate more than whispering sound and very low light for years, nor have I been able to walk outside, walk unassisted, sit upright, or stand up completely without passing out, but I am planning on attending my sister’s wedding ceremony at the end of the month!

Yes, please take that in.

This will be the first time I have left the house, except for being taken to the doctor or emergency hospital visits in over 4 years…and I will be my sister’s maid of honor. It’s huge, and it has been an amazing motivation for me. Now that the day is getting so close, I admit, my determination and excitement is wavering as reality is sinking in.

As I prepare for the coming wedding: mentally, physically, and emotionally, I will also be dipping my baby toe into the divorce, my loss, the transition, and possibly, at times, wholly plunging into those bubbling emotional waters- once I start writing, who knows what will happen!

This has never been a journal-type blog, but for at least this month, I am going there. You are invited, if you want to come with.

New page, DisabledandDivorced just launched.

A Season of Waiting

10996053_10204217591452391_1532425959343231769_nWaiting is never a simple task. If you ask me if I am a patient person, I will say that I am patient with others, but have difficulty being patient with myself.

You might be waiting for an important test result to come in, for doctors to finally diagnose you after years of unexplained illness, for the medication trial to become available, or you might be waiting to see if your surgery heals without additional complications. You might be waiting for a loved one to return safely from a dangerous trip overseas, for important news about your finances, or you might be waiting to see if your friend will recover from cancer.

Waiting is a helpless feeling, no matter how much we can “help” the situation…the feeling that we are not the ones in control of the outcome makes us feel useless. Not knowing the outcome causes anxious, nervous impatient feelings that, for me come in waves which are accompanied by a racing mind.

For a person who started out bread to be the go-to person for fixing and fast problem solving, it seems life instead has been teaching me about patience, seeking guidance and waiting out storms. Instead of giving me problems to solve, I have problems that can only be solved through the healing of time.

Even though it is a useless feeling to wait, wait, wait, I don’t believe in waiting we are supposed to throw our hands up and stop seeking guidance. There are always more calls we can make, more specialists we can see, ways we can take care of our health, and people we can reach out to. But, if you have been waiting on something that weighs on your heart, there is only so much you can do to push the pace of the answer you so desire. Sometimes we can spin ourselves into a frenzy trying to get the answer we want to come to us faster, when some things are out of our hands. Praying, quietly seeking guidance and listening are also useful actions- though exceedingly more difficult to choose.

I am waiting for some very important answers in my life right now…Some answers that will forever change life as I know it to be. Maybe you remember a stretch of time like that from your past, and how you felt. How did you fill those long days waiting for tomorrow? Because of so many years of chronic illness, it feels as though waiting has been a regular part of life. Life with chronic illness teaches us to find the good, useful, and gratitude inside of the seemingly unlivable. These years of health struggles have taught me to lean into my faith and seek spiritual guidance. I am so grateful for the support and wisdom from those I respect, and I hope to be molded during this trial – what is God teaching me in this moment? …Because nothing is ever wasted.

Earlier this year, I wrote that “strength comes at the step we are on. Not weeks or months ahead.” As I work on waiting, and asking for patience, I try not to dwell on what challenges might come tomorrow. If you remember, my opening post for 2015 was a “No Fear Campaign.” It makes me want to shake my head when I think of the year God has been preparing me for!

About waiting, many say, “Just give it to God” as though it is as simple as forgetting about your heartache with your spouse, or your worries with your family, or your daily physical struggle with health that I know so many reading this are living with. I’m sorry if anyone has said that to you without compassion for what you are going through.

The past couple weeks have felt like an avalanche in many ways. When all of the rubble and dirt fell over me, and I went sliding down the hillside into the valley with the mound, even though I’m covered in a whole pile of dark unanswered questions, underneath, I’m praying, and studying, and being still (listening). Hopefully, this trial of waiting will lead to growth from that soil and rubble. My story is not finished. God is not through with me. Waiting is not doing nothing, waiting can be the most growing period in a person’s life. I am asking to be transformed during a time in limbo.

What did you do or what did you learn while you were in a season of limbo?

“Patience is power.

Patience is not an absence of action;

rather it is “timing”

it waits on the right time to act,

for the right principles

and in the right way.”

― Fulton J. Sheen

“But those who wait on the Lord shall renew their strength;

They shall mount up with wings like eagles,

They shall run and not be weary, They shall walk and not faint.” Isaiah 40:31

“What we are waiting for is not as important as what happens to us while we are waiting. Trust the process.”

― Mandy Hale

When you say I do…

My husband has been my caretaker for the past (almost) 4 years since I have been bed bound. Before that, I was chronically ill for 7 years prior and used walking aids yet remained mostly independent and continued working, though life for both of us was constantly changing. Through 10& 1/2 years, illness builds walls that we continue to find ways to scale, breech, knock down, or peer through at one another despite the seemingly impossible circumstances.
Even though I often choose to discuss and focus on the things about my relationship I am most grateful for, there are multiple hardships being in a patient/caregiver scenario that are very personal between us.
If you are in a relationship and one or both of you has a chronic illness (like my husband and I), I encourage you to read this wonderful article from The Unbroken Smile’s blog discussing marriage and chronic illness.

The unbroken smile

With my 12 year Anniversary fast approaching I started wondering how others react when their loved one becomes chronically ill. Do they stay by their side knowing it will not be easy? Or do they leave because this is not what they “signed up for”? It just makes me think of our wedding vows “I, (name), take you (name), to be my (wife/husband), to have and to hold from this day forward, for better or for worse, for richer, for poorer, in sickness and in health, to love and to cherish; from this day forward until death do us part”. Sure we get up in front of our family and friends and recite this and celebrate the love we have for each other, but do we ever stop and truly think about what this may mean? Most don’t until we are faced with this, “in sickness and health” we do…

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She’ll Always be Baby to Him

She’ll Always be Baby to Him

He walks through the door to a woman on the floor. She’s sick now, and he never knows who he’ll be coming home to. The house was built with children in mind. They left a life of adventure behind to save and to plan ahead for a wonderful family instead.

She was still a girl when the illness took hold. But neither of them let go of their goals. And they kept looking on to a brighter tomorrow when all of thier visions would come into view.

More health concerns, the bills piled high, the doctors said she’ll get worse through the rest of her life. And the dreams that once made them laugh were fading into thier past.

Oh, but the one hope that they couldn’t ignore was to start a family so they prayed to the Lord. But her body took a terrible turn- the house went dark- their last dream (like her pain)- it was burned.

They believed that their love would always survive, but the emptiness was an angry kind that filled the corners of their home with doubt. Without the promise of a little one, dreaming just didn’t seem much fun for the couple who had survived everything–until this.

Now a grown woman is like his child and she wonders if taking care of her will drive him wild, but she keeps on praying love will see them through. The loss they mourn is another Chronic Pain that they must both endure, but Hope and Love they cling to just like glue.

-A Body of Hope

********

Brett Williams "Isole" | "She'll always be Baby to Him #Spoonie #endametriosis A Poem about how chronically ill couples survive without children #MS #CRPS #Marriage

This striking image is courtesy of artist Brett Williams. “Isole” is one of Brett’s chalk works. Please visit one of his pages to purchase an original piece for your home or a gift.

www.brettwilliamsart.com

Facebook/BrettWilliamsArt

If I Ask You For More: poem

~If I Ask You For More~

If I ask you for more, are you sure that’s ok?

Will you break into pieces?

Will you just blow away?

*

If I ask you for more, are you sure that’s ok?

Will it eat up inside of you until your heart turns gray?

*

If I ask you for more, are you sure that’s ok?

Would you think me a burden and pack me away?

*

If I ask you for more, are you sure that’s ok?

If I’m not the same person, will you leave or you stay?

*

If I ask you for more, will WE be ok?

Can you just take my hand and sit with me today?

a Body of Hope

*****

Today is Caregiver Appreciation Day. Let those who have supported you along your journey know how much they have meant to you.

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