Tag Archive - coping

This is so hard :(

May 26, 2011 in family, Love between Tommy & I, My Story, SparklesGlitter, SwitchingGranny's Stuff with 3 Comments

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Still shedding some tears. I just can’t imagine that I am writing about loosing our beloved Golden Retriever just 6 weeks after posting about the loss of our 18 year old Kitty.

Blog post I wrote then:

Just two weeks after burying Tommy’s Dad. But here I am typing and crying at the same time.

Initially we thought “Bus” was grieving the loss of her lifetime companion “Kitty”. Yet in hindsight I see that she too was dying. A couple of times in the past few weeks I’ve thought “Oh No, not my dog too”! So I think in the back of my mind I knew she was going all the while attributing her decline to her own grief, her allergies and her advancing age.

By the end of last week we pretty much had no doubt. We’d hoped to wait until the end of the weekend to get her to the vet knowing we’d be hearing news we didn’t want to have to accept. By Sunday morning there was no option of waiting. We took her to the emergency care Veterinarian. They were so compassionate and so kind.

I have a lot more to share about our Sweet Bus yet I’m not ready to offer up her tribute yet. So I’ll share some favorite pictures as a sort of obituary and work on a more fitting post about her life later.

RIP Bus 2000-2011

 




 

 

View from my sofa

March 18, 2011 in Chronic Illness, Inspiration, Multiple Sclerosis, Scripture with 1 Comment

Limited perspective – Hope forever

My sofa

 

Sounds like an oxymoron. Let me assure you it isn’t at all. Because of a progressive disease process (multiple sclerosis), I’ve become more intimately acquainted with my sofa and less involved with the real world outside my house.  In so many ways I’m terribly disappointed because I just love life and being involved with people brings me great joy.

 

Because of the Internet and my interactions with people online my life has remained interesting and full of purpose.  Many of the people I’ve come to know and love I would not have known if I were still actively keeping up with two jobs and my pursuit of personal fitness.

 

No doubt life as I knew it has changed!  My view from my sofa is limited indeed. But the things that really matter, the fruit that is produced for eternity may actually have increased. “Jesus Christ is the same yesterday, today and forever.”

 

“The steadfast love of the Lord never ceases;
His mercies never come to an end; they are new every morning;
great is your faithfulness.

“The Lord is my portion,” says my soul,
“therefore I will hope in him.”

 

Either I will see healing in this flesh or when I am in His presence. Until then my desire is to respond to my circumstance in a way that brings Him glory and encourages others.  So many dear people are alone on their sofas or sickbeds. Many have no hope for a good day that allows them the ability to get out and do some of the things they enjoy. My heart aches for them and my prayers are for their encouragement.

 

It’s true- when we focus on others our own situation becomes less important. Philippians 2:3 “Don’t act out of selfish ambition or be conceited. Instead, humbly think of others as being better than yourselves.”

 

Beware the walls crumble

February 23, 2011 in Chronic Illness, Friends, Inspiration, Love between Tommy & I, SwitchingGranny's Stuff with 1 Comment

A couple of years ago I was blessed to meet a twitter friend @GailHyatt IRL (in real life). She came bearing gifts.
One of the gifts, a book titled “Jesus Calling” by Sarah Young has continued to minister to me because it is book of daily devotions.

Todays devotion was  powerful for me: 

“Be on guard against the pit of self-pity. When you are weary or unwell, this demonic trap is the greatest danger you face. Don’t even go near the edge of the pit. Its edges crumble easily, and before you know it you are on the way down.  It is ever so much harder to get out of the pit than to keep a safe distance from it. That is why I tell you to be on guard.

There are several ways to protect yourself from self-pity.  When you are occupied with praising and thanking Me, it is impossible to feel sorry for yourself. Also, the  closer you live to Me, the more distance there is between you and the pit. Live in the Light of My Presence by fixing your eyes on Me.  Then you will be able to run with endurance the race that is set before you, without stumbling or falling.”

Wow, powerful truth here.  It is especially easy to get all to close to the edge  of the pit of self pity when you are dealing with chronic illness.  Who would want to add being trapped in a nasty pit with crumbling walls on top of being weary or unwell?   Not this Granny! And I hope not you!

Immediately after reading today’s devotion I prayed and thanked God for this warning and ask Him just what I should do to move myself even further from the edge.  In His faithfulness He brought to my mind many who were lonely and hurting today.  I prayed for them then made telephone calls to a couple of those that He brought to my mind.

What do you do to keep from nearing the crumbling walls of the pit of self pity?

Okay here’s my brain after 5 years

February 4, 2011 in Chronic Illness, Multiple Sclerosis with 2 Comments

I’ve just endured a wait for results from my most recent brain MRI.  Knowing that God’s Word tells me  in 2nd Corinthinans 4:18 “Not to look at the things that are seen but instead to look for the things unseen; for the things seen are temporal and the things that are unseen are eternal”

MRI of my brain 2006

MRI of my brain 2011

It’s been a huge relief to see that my MS lesion load has not seemed to progress in these last 5 years!

MRI of my brain in 2006


MRI of my brain in 2011

So, I just wanted to share this good news.Studies say that lesion load on MRI have no relevance on disability in MS.
Yet,having the virtual assurance of no big changes is sure encouraging when it’s MY brain!

Online as in eternity I’m whole and well

October 15, 2010 in All Things Tech, Church Related, Inspiration, Multiple Sclerosis, My Story, Scripture with 1 Comment

"iMacandRosesinVase"

We all know that things aren’t always as they appear online. And I for one am grateful for this. Because since my diagnosis of multiple sclerosis in 2003 my journey in this life has taken a detour that I’d never imagined. I surely have more days that I’m physically horizontal than upright. Yet from your perspective I’m either out and enjoying you personally or online fully whole. Because you don’t have to see the actual real- time picture for our friendship to grow.

"LayingonSofawithLaptop"

I’m a lover of people; and without daily interaction with others I would surely be overwhelmed with depression as well as the issues of living with a chronic illness.

Yet life is full and exciting.

I’m so glad we have the technologies for interaction in New Social Media that allow me to have interesting and meaningful conversations with you from my sofa! I’m still making friends that are genuine. I’m still able to serve in my local church even while in my pajamas. I’m able to travel the world. And most importantly I’m able with the direction of the Holy Spirit to make an eternal difference right here right now!

What are your ideas on how we can help others who are chronically ill or home bound take advantage of this new medium of communication?

Those who look to him are radiant, and their faces shall never be ashamed. Psalm 34:5

You have done many miraculous things, O LORD my God. You have made many wonderful plans for us. No one compares to you! I will tell others about your miracles, which are more than I can count. Psalm 40:5

Coping with the truth

March 13, 2009 in Multiple Sclerosis, SwitchingGranny's Stuff with 0 Comments

Low burden of white matter signal abnormalities: My MRIs

I’d love to say that the worst is behind me. (No not my ever gradually spreading rear side); but the long couple of months of virus’s, infections, and disabling fatigue.

Multiple Sclerosis is so different for everyone. And even though I’ve been diagnosed since 2003 and very likely been dealing with this disease process for a few years longer than that, I still tend to be in denial some. Because when I am not ill or hot I don’t have many issues with mobility which is generally what one thinks of when hearing MS.

And I have this pride or self preservation hope that this isn’t getting me down or gradually reducing me to less physically than I want to be.

Tuesday I visited my family Dr. because I wanted to know if I was over looking something besides MS bringing me so much fatigue and hence depression. Like say a thyroid condition or even some mono.

I told him I didn’t want to miss something treatable because I happen to have this label of progressive neurological disease.

Well he sat me down after listening and going thru my e-room records from two weeks earlier. And he said “I think I know what is going on and I do believe this is part of your Multiple Sclerosis compounded with the fact that you have been knocked down with several illnesses recently- I think your immune system has just been run over and we need to give you a jolt” He knows I hate doing any steroidal treatments because of the side effects and the fact that they aren’t proven to do any long term good.

However I was ready to do nearly anything to begin getting some strength back. To be able to count on myself and be able to do not just the things I need to get done as activities of daily living.. but also to resume doing things I enjoy without having to pay with an entire day in bed after.

Apparently my Vit B levels were low as well. I did not want to do IV steroids or a dose pack that begins with high levels of steroids and then titration down. So I got a shot in the bum that included some B12 and steroids. And am doing a very low dose of oral steroids for 10 days and taking a prescription B12 vitamin long term.

Tuesday I did not really feel better. Oh I was better to get ready and get to the 8:00 am Dr’s appt. And did take Breanna to dance class. But as usual I was completely on the sofa by the time sweet Tommy got home from work and did not do anything more.

Wednesday I stayed on ECM (energy conservation mode) the entire day), as to be rested up for a dinner/seminar provided by our local Tri-State Multiple Sclerosis Association

Thankfully I was able to attend and enjoyed myself. In fact Wednesday night after getting home I was really wound up and had some trouble sleeping. One pharmaceutical tends to lead to another. So sleeping pills were necessary.

The title of this MS seminar was ” How to know if my MS is worsening and what to do about it”. A Dr. Berry Singer from the St Louis Comprehensive MS center was the speaker. I think some denial was removed listening to him. He had us consider how far we were ale to walk 1 year or 2 years ago as compared to now. Well.. remember I was a racewalker at one time. And last year I was still enjoying riding my bike and walking my dog through the neighborhood. Now I must utilize pushing the grocery cart when just trying to go to Walmart. Now I have Tommy drop me at the door of the store before he parks. When I walk my dog it is only enough for her to relieve herself and then we return home. So things have indeed progressed.

Dr. Singer has a nice website that is not particularly sponsored by drug companies like most. In particularly he has a nice short animated video on the front page I think is good.

Anyway to keep this blog from being a book. I just wanted to say that I am feeling more like myself right now. And praying to continue to have some time of constant “up” time.

It is so difficult to be self focused. There are so many folks dealing with much more serious things.

And what really convicts me, is that I know my adversary; the devil walks around seeing who he can destroy. And although I am confident that he has no claims no my soul and cannot take God’s free gift of salvation away from me. He can steal my joy. And the joy of the Lord is my strength and my testimony. I rebuke you satan in the mighty name of Jesus. Lord keep me meditating upon Your word and those things that are lovely true and of a good report. In the midst of this perverse and wicked generation I pray You receive the glory due your Holy Name. I pray that my response to the trials of this life are acceptable to You and are used above all else to bring others in to the knowledge of Your saving grace. Oh how I love you my Lord.. the Lifter of my head!! Thank you for praying saints and the comfort and healing of Your Spirit. Amen.

Keeps me Humble

March 5, 2009 in Inspiration, Multiple Sclerosis, Scripture with 0 Comments

Always was very thankful for good health. I love life and people. And most of all I have absolute confidence in and passion for my Lord Jesus.

There is this thorn in my flesh. Multiple Sclerosis! Although I’ve not been disabled much regarding mobility (only when I’m hot from either external heat or an internal rise in temperature), I do face “issues” from the MS that cause my good health to be like a yo-yo.

When I am feeling good I am great. And love every minute of it. Yet I can be shot down in a matter of hours.

There is “background noise” that I deal with daily. The fatigue, memory problems, urinary retention to name a few. I deal with these things with medications and regular self catheterizing.

There are things that aren’t so common like episodes of migraines or spasticity.. also dealt with mostly pharmaceutically.

The urinary retention is a big problem for me. Because if my bladder isn’t emptied all the way it is a breeding ground for bacteria. Yet self catheterizing no matter how clean the technique or sterile the equipment, catheterizing introduces bacteria into the urinary tract.

Thus I’m really prone to urinary tract infections. These come on so rapidly. I don’t always know what I’m dealing with right away. Because my first symptoms are extreme weakness both physically and emotionally. I’ll feel like I’ve suddenly gotten really lazy and so easily weepy. Then once the fever hits I become dizzy and even weaker from the rise in body temperature.

So this is very difficult for me. I just hate being on my back. And I hate to complain. I desire to be well and fully serving my God. And I know that He can get glory even though I have this thorn in my flesh. He shows His strength when I am weak.

This is likely a warfare with satan wanting me to be discouraged and unfruitful. And I admit I do get discouraged. But it is only because I become weary physically. I do not become weary spiritually. By His mercies that are new every morning and by HIs grace I am kept hopeful. I know the ultimate end. And in the mean time I know that there is healing in His wings. He is able.
And if I do not find healing while on this earth, I will still be fruitful. I can still encourage others. I can still fruitfully serve Him.

satan has no claims on me…. I’m under the shed blood of Jesus- redeemed and awaiting my reunion with Him.

My help comes from the hills from the Creator of heaven and earth.. who was and is and is to come.

Amen

Horizontal

March 5, 2009 in Multiple Sclerosis, SwitchingGranny's Stuff with 0 Comments

Portrait by Breanna

One of the biggest issues I have with multiple scleoris is that I am unable to depend on myself. Good thing I am a Christian and can consider less of me and more of Him my goal. Otherwise I’d be so frustrated.

The other huge problem I have is that dealing with a chronic illness makes me self involved. The Lord knows my desire is to be selfless and a servant to others.

I blogged about my issues with urinary tract infections last week. And the most recent one caused me to feel I was going down hill quickly. Like a train on the back side of a mountain. Faster than I could keep up with. And my back was aching along with chills & fever. So I emailed a physician friend and of course she suggested that I get to the E-room to be sure it wasn’t a kidney infection that could get into my blood stream and be hard to treat. (it was Sunday morning)

So we reluctantly made the trip to emergency. It was a better experience than I’d anticipated. Nice folks and not an all day affair.
My temp was down at that time. My urine came out showing very little problems. My blood work was fine. Yet I was clearly in pain and miserable. They ultimately did a cat scan to check for a kidney stone. Nope

But they decided that since I take antibiotics prophylactically, and had indeed taken 3 cepro last week. It is possible that an early infection wouldn’t show up. So they are treating me like it is a uti that was heading towards my kidney.

Who knows.. makes me wonder sometimes if I should give up trying to find out why I am down when I am down. Just treat when I need to treat and wait to get well again.

My symptoms were so bad I had to also take pyridium. And it helped. By Tuesday I felt well enough to take Breanna to her dance class.

But that was it. Since then I’ve been horizontal on my sofa. Sad but true. How desperately I want to have energy and strength enough to just do things around the house. Yesterday I tried one of my amphetamine pills for ms fatigue. No help at all. Fever off and on.

Can’t do much more than lay with my precious macbook on my lap. And lots of praying because besides needing it myself.. I can serve the the Lord and others by engaging with my Lord and the privilege of prayer that He has given me.

Hoping to present a better report soon.

Unpredictably Frustrating

March 5, 2009 in Multiple Sclerosis, Scripture with 0 Comments

Early after my diagnosis of multiple sclerosis in 2003 I created this blog. Yet I’d never posted!

Seems like most of my posts had gone to my online journal with MSIF

And I’ll keep posting to the MSIF site because it includes an online community of folks with multiple sclerosis that I want to stay connected to.

But there are things to share here too.

The most unique thing about multiple sclerosis is how it differ’s not just for every individual who has MS; but that each day for me is completely different from the previous.

I cannot count on how I will feel from one day to the next.
My diagnosis is not the more usual relapsing remitting MS. I’ve been told that I deal with primary progressive MS.

So besides the times I’ve awakened with optic neuritis, I’ve never had a completely new symptom pop up that goes completely away. But I can sure feel great one day and be nearly bed ridden the next.

For example, yesterday I felt wonderful. Weather-wise we’ve encountered a cool front. At least compared to the weeks of 90 degree days. Yesterday it was low 80s! Tommy and I hand waxed both cars! Then I did things around the house and went and got some groceries. Made up some soup. And had our Granddaughter stay the night.

Today however I am unable to accomplish anything productive.
Just barely made it through the morning visiting with our Breanna. No church! Tons of things I want to do to prepare for our upcoming trip to Michigan. Yet, here I lay with my macbook on my lap. Blogging horizontally!

Unpredictable! Frustrating.

Two very descriptive words for Multiple Sclerosis.

I’ve never wanted to consider myself sick. In fact I’d be the first to argue that MS is not a sickness, just a progressive neurological disorder! But when I’m fatigued to the point of being in my bed, I begin to think that maybe I am sick!!

Next post I pray will be more uplifting.