WORD-FILLED WEDNESDAY

Answer me when I call to You,
O my righteous God.
Give me relief from my distress;
Be merciful to me and hear my prayer.
~ Psalm 4:1

Hey everyone,

I found this scripture and it could not be more perfect for today. After seeing the doctor on Friday, I have been trying some new meds. They have made me extremely nauseated, but are definitely helping with the pain. Praise the Lord! The side effects are supposed to go away after a few weeks. Please help me pray they do, because I REALLY need to be able to tolerate this medication!!

I hope you all are enjoying your week. Thanks for your continued visits and sweet comments. Each and every one of them truly bless me and make me smile!

Love you all!







The purpose of Word-Filled Wednesday is to share God’s word through photo or graphic image combined with a verse from the Bible. Word-Filled Wednesday is not about books, authors or artists, it’s about God and HIS WORD ONLY. If you’d like to join me and other ladies as we share our Word-Filled Wednesday, just click on the icon below.

WORD-FILLED WEDNESDAY

Welcome to Word-Filled Wednesday! As always, the purpose of WFW is to share God's Word (no famous quotes or other literature, only the beautiful Word of our Heavenly Father) through scripture and pictures. The host for this week is Christy at Critty Joy. Please take a few minutes to visit her and be encouraged!

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'Be joyful always; pray continually; give thanks in all circumstances, for this is God's will for you in Christ Jesus.'

~ 1 Thessalonians 5: 16-18 ~

The commands in this verse I strive very much to follow. However, I must admit, living with a chronic illness like Dysautonomia often makes it extremely difficult to feel joyful. :0( It makes a lot of things difficult. It makes it difficult to remember to pray as much as I should - or would like to. It makes it difficult to see the blessings the Lord has given to me because of the pain and sickness I am continually dealing with. This makes it more difficult to properly express my thankfulness.

I want to do all these things, I really do! But lately I just haven't felt up to it, not even a little bit! Like a stubborn little toddler, my body has absolutely refused to cooperate. The pain is relentless except for a short window of time after I take my medication, but that only lasts for a little while. Like literal fog on a dark night, the 'brain fog' I experience makes me unable to concentrate and my memory extremely poor. Nausea is my constant companion and frequent vomiting wreaks havoc on my already aching body. Sleep, like time, has become more and more elusive. I want, I NEED, to sleep so badly, but I can't. I very rarely sleep more than an hour or so at a time. That in and of itself has really worn me down, mentally and physically. When you are exhausted everything is made worse.

Needless to say, it is very hard to feel joyful with so many un-joyful things happening. However, I keep reminding myself that THIS TOO SHALL PASS!! I know that one day I WILL BE healed - if not on this earth, then when I get to my Heavenly home! I will be given a brand new body. One that is completely healthy and completely pain-free. One that can walk and run and dance and play!

Until that wonderful day, I will CHOOSE to be joyful, I will CHOOSE to keep praying and I will CHOOSE to give thanks to my amazing God for all that He is doing in my life because I know that He has plans for me! He has plans to make me prosper and not to harm me, plans to give me hope and a future! Amen!

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Thanks again for stopping by. I hope you all have a truly wonderful week.

Blessings,

Teresa

IN SICKNESS AND IN HEALTH Communicating With Your Spouse About Chronic Pain

We naturally share about our aches and pains with our spouse when we are chronically ill and in pain, but how much talk is too much before our spouse grows weary of hearing about a problem he just can't fix?

"I feel like there are thumb tacks in my bed!" I tell my husband as he crawls into the other side of our bed. "I know there is nothing there, but I feel bruised all over."

“I’m sorry,” he offers with a sympathetic voice, but there is little else he can do.

“Actually, I'm really nauseated too,” I add. “It’s probably just the meds. I wonder if I should eat something or if that would make it worse. Hopefully it will pass if I can just go to sleep.” Before I finish my sentence, he is already starting to snore because he's so exhausted. *sigh*

For many of us, our spouse is our best friend. If our relationship is good, we want to share our feelings with them. Even if our relationship is hurting, we feel that by explaining our pain, our spouse may sympathize and be more loving toward us.

Although we don’t want to burden them by constantly sharing about our aches and pains, when we are hurting there is a desire to be heard and have our feelings validated. By talking out loud about what we are feeling, it somehow makes the pain real. It’s no longer “all in our head.”

Galatians 6:2 tells us “Carry each others burdens, and in this way you will fulfill the law of Christ.” At some point we must carry these burdens to the Lord, as well as a close friend, rather than just count on our spouse to carry the burden of listening about every single ache.

Although our spouse may not be suffering from a physical ailment, there are still many losses that he is grieving. For example, it is an emotional thing to watch the person you love be in pain and not be able to 'fix it', especially for men. He may be suffering as he watches you lose the ability to do things you love. He likely misses the couples outings you once took together when you could do physically active events, whether it was date night or just taking long walks together in the evening. He may be frustrated that even his hugs can cause you to wince. Counselors have found that there are three major areas where marriages suffer: money, time and physical intimacy.

Your marriage may be having difficulties in all three, specifically because of the role chronic illness has taken on within your marriage. Is it possible to “share our burdens” with our spouse without overburdening him and making him want to run the other way every time we open our mouth to share another symptom of our ailments?

Be a team with your spouse

It’s you and your spouse “up against” the illness. Although you may feel like your spouse is merely a spectator, intentionally make him a part of your team fighting the battle of pain, in whatever way he is most comfortable.

Ask your spouse if you can share some information about your illness so he has a better idea of what you are going through, but don’t overwhelm him. If he is willing to attend a few doctors appointments with you, let him, and give him time to ask the doctor his own questions. For example, giving him a brochure may be better than handing him a 250-page book. If he listens to podcasts, find some that would be beneficial for him to listen to about your illness. Acknowledge that there may be role or responsibility shifts in the marriage due to the illness. Be open about what you are struggling with and where you need help. For example, if you can no longer scrub the bathroom, let him know well before the grime gets out of hand.

Connie Kennemer lives with Multiple Sclerosis and she candidly shares the struggle that it can be to find the right balance and word. “I am not as mobile as I used to be and I often ask more of my husband such as ‘Can you work at home this afternoon?’ or ‘Why do you have to go to another meeting?’ How much should he accommodate me because my body is changing? He doesn’t always know when to stop and encourage me to try things myself. This is a constant challenge.”

Be reasonable in your expectations

We often marry someone who has our opposite personality style. If you need to read every article about your illness, but your spouse doesn’t, it may simply be because your spouse has a more laissez faire attitude, not because he doesn’t care. His response to a crisis may appear to be nonchalant on the outside, but it doesn’t mean he is not worried and concerned about you.

On the flip side, maybe you are emotionally overwhelmed by the diagnosis and you need to just sit back and take it all in before you start doing research, while your spouse is spending hours at the computer finding out everything he can on the latest treatments, medications and signing you up for the healing service at church. He may accuse you of being in denial about it all, since you aren’t showing as much passion as he in finding out more about your illness. An excellent book recommendation in helping you understand your communication styles better is “Men are Like Waffles, Women are Like Spaghetti” by Bill and Pam Farrell.

Have information about your illness available for when he is ready

If you are having a conversation and you want to explain more about how you are feeling, or details about the illness itself, you may want to have books with sticky notes on the pages you think he’ll find most helpful. Or bookmark pages you can read together and then discuss. Connie says, “After ten years of living with MS, I am past the whiny stage, but Rex sometimes holds back; that’s when I need to ask him more questions about his feelings.”

Creatively keep him informed about the embarrassing parts of the illness

If your illness is going to cause you to be in the bathroom during eighty percent of the events you attend together, you need to let your spouse know that this is part of the disease. Health organizations have brochures on symptoms. You can say, “I’m dealing with some personal matters of this illness right now; I don’t really want to talk about them yet, but they’re in this brochure if you’re wondering.” Avoid sharing every detail if you can.

Look for other ways to vent besides always dumping on your spouse

“I realized that I held onto all of my frustrations of pain during the day and then ‘threw’ them at my husband as he came in the door,” shares Cheryl, who lives with chronic fatigue syndrome. “My actions set the tone for our entire evening and even though I felt better, he felt worse, and it lasted all night. He was beginning to dread coming home at night.”

Cheryl began to put aside the last two hours of her day to spend time writing in her journal, praying and doing something she enjoyed that calmed her. “Writing in my journal gave me the chance to express my frustrations, and then prayer really began to minimize the negativity too. My husband quickly noticed a difference and it’s made our relationship so much stronger.”

Find some ways to get involved in your community or a special hobby

What else do you have going on in your life, other than your illness? It’s easy to be overwhelmed with doctors' appointments and just maintaining our illness, but it can result in a pretty dull life. Even if you have limited energy, do something you’ve always wanted to do that doesn’t have a deadline. Put together memory albums for your grandchildren, clean out just one drawer, find a new craft or hobby, volunteer to be on a prayer chain. Soon you will find that your illness actually is the last thing you want to talk about when you have had much more interesting events in your day.

Conclusion

So, the question is, how much talk is too much? Unfortunately, there is no perfect answer. It is different for each person and each marriage. Learn to look at your situation objectively. Honestly ask yourself, "How often am I bringing up my illness and pain? How do I benefit from talking about it more often than necessary? What am I seeking? Validation? Understanding? Actual physical help?" Ask yourself if talking about your illness could be a way of getting your spouse’s attention, and if this seems to be the only thing he responds to? Regardless of whether it is attention, acknowledgment or understanding, how can you get these needs met by the Lord instead? How is it negatively impacting your life, or those around you, by discussing it all the time?

And then take a moment to really ask yourself “Is there a better, more creative way I can create intimacy with my spouse, other than just complaining about each ache and pain? What activities can I still share that could help us grow closer together?”

And then when you do need to share with your spouse, send up a prayer to the Lord first!

“Heavenly Father, You know I do not want to burden anyone, especially when I know there is really nothing they can do to 'fix' me. I just really need a big hug from You right now! I know that my husband cares about me very much and truly wants to encourage me, even on those days when he doesn’t seem to know how. Please give me the wisdom to know when to ask for help/comfort from him and when I should only come to You to fulfill all of my emotional needs. Amen.”

About the Author, Lisa Copen - You will find more articles and overall support while living with a chronic illness and/or pain, please visit Rest Ministries so you don’t miss any of their great content and to be entered for their monthly giveaway! Lisa Copen is the director of Rest Ministries, author of 'Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend' and founder of National Invisible Chronic Illness Awareness Week.

I AM SPEECHLESS

No really, I am.  Oh, I have plenty to say.  I just can’t ‘speak’.  As if not being able to walk…or stand…or even sit up for an extended period of time wasn’t enough….now I can’t talk either!  HUMPH!

Let me just say, I mean…Let me just write….I never, ever ask this question anymore, “WHAT ELSE COULD POSSIBLY GO WRONG?!?”  Trust me, I quit asking that question a VERY LONG time ago!  Because I ALWAYS get an answer to it!!  :0)  

I guess you’re probably wondering why I can’t speak.  Well, it all started Tuesday night when I went to bed early because I was feeling very, very yucky.  I was very dizzy, light-headed and nauseated.  That happens often after I eat.  It is just part of this thing called POTS.  Whenever I eat, especially if I eat anything close to a normal size meal, I often develop these type symptoms.  It is mostly because of something called ‘Postprandial Hypotension’.  Postprandial Hypotension is a sudden drop in blood pressure after eating.  Just as blood pools in my lower extremities and abdomen when I stand, a large amount of blood flows to my digestive system after I eat.  Ordinarily, our bodies would keep this from happening by increasing our heart rate and constricting certain blood vessels in order to help maintain a normal blood pressure, thus enough blood to the brain.  However, because of my illness, this mechanism doesn’t work properly in me.  Therefore, it leads to various symptoms like dizziness, light-headedness, nausea and/or vomiting and sometimes even syncope (fainting) because of such low blood pressure and lack of oxygen to the brain.

Tuesday night, because I was feeling so very nauseated, I decided to take some medication for it.  As I attempted to swallow the pill, it got stuck in the back of my throat.  I tried and tried to swallow it but it just wouldn’t go anywhere.  As I continued to try to swallow it, my throat began to burn like crazy!  It literally felt like I had a match lit inside my throat.  I drank more and more water trying to get it to go down but it just wouldn’t budge.  It just continued to burn!  By this time, I was in a state of panic and I was crying like a big baby.  After several minutes, I began to cough pretty violently and this caused the tablet to come flying out of my mouth!  Halleluiah!  Unfortunately, I quickly realized that the burning had not stopped!  I was still in so much pain and no matter what I did, the burning sensation would not stop.  I drank water, tea and milk, and even ate some bread, but it continued to burn.  Finally, I remembered my daughter’s ‘Magic Mouthwash’ that she got when she had Strep a few months ago.  When I worked at the doctors’ office, we used to prescribed this all the time.  It is some awesome stuff!  It generally has Benedryl, Maalox and Lidocaine in it.  It not only soothes and coats your mouth, throat and stomach as you gargle and swallow it, it also numbs everything because of the Lidocaine.  I gargled and gargled with that stuff and finally….some relief!  Praise God!  I was so thankful that some of the pain had finally subsided.

After all the commotion was over, I immediately noticed that I could not speak.  My voice was completely gone.  At that moment, though, I did not care!  All that mattered was that the pain had eased and I could finally rest.  I could go to sleep.  And so I did. 

Since Tuesday night, I have not been able to speak without squawking.  It is very hard to understand me unless you get really, really close and I whisper.  However, I have learned that whispering is really hard on the vocal cords so I’m trying not to do that either.  My doc says that the incident definitely injured my larynx – aka - ‘voice box’.  He called it a ‘pill ulceration’ on my larynx and said it will probably take anywhere from several days to a couple of weeks for everything to be back to normal.  So for now, I have to rest my voice.   I still find myself whispering a lot, which I’m trying to remember not to do, but it’s SO hard!  Like anything else, you don’t realize how much you use something until it’s gone! 

Thanks for checking in!  I would really appreciate your prayers – just like always.  See ya soon!

MY MOST RECENT HOSPITAL STAY June 30th - July 6th, 2009

(I apologize upfront for the length of this post. Although I'd be very honored if everyone were able to take a few minutes to read it, I totally understand that you all are very busy! As I've said before, I mainly want to use this to keep my family and friends up-to-date on what all is going on in my life and to provide education for them as needed about all the various things that go on. However, the main point behind this post was more about reaching out to others who have, or may have, this disease and are looking for answers. My prayer is that the Lord will lead someone here who has been searching for answers about this disease. I pray they will not only find refuge and solace here among others like them, but that they will find it in the arms of our Lord and Savior, Jesus Christ. If I can help just one person learn something new about the illness, know a little more about how to better manage some of these horrible symptoms and, most of all, just help them to know they are never, ever alone...then I have accomplished my goal!)

So here we go! As I was telling you in my last post, after getting my new port placed on May 28th, I seemed to be doing relatively well – all things considered. Then on Tuesday, June 30th, I got up around 7:30 and my husband, D, helped me downstairs to my recliner where I spend most of the day, on my ‘fair - good days.’ D is an ex-Paramedic like me, so after being properly trained by home health, he is now the one who does most of my port management. On that particular day, we followed our usual morning routine, plus it was also time to re-access my port after not accessing it for a couple of days. The port has to be de-accessed and then re-accessed weekly in order to help avoid infection.

Once it was accessed, D got a bag of IV fluids going before he left for work. He was already running a bit late that morning and needed to be at a meeting soon so he didn’t linger long afterwards. Approximately 15 minutes after he was out the door, I started having the same horrible feeling that I’d had when my port had been infected – that one that comes on so very rapidly and without warning! I became extremely cold and then started having chills in the matter of a couple of minutes, if that long. I immediately called D and had him turn around and head back home and then I had my daughter, B, help me back into bed. By the time I got there, I was having those full force, extremely violent chills. I knew something serious was wrong again. D was home in a flash, he got in touch with my doc and we headed for the ER.

Now, I will admit that I am not much of a fan of our local hospital’s ER. (I will write more about all of that in an upcoming post.) However, this time I have to say it all went more smoothly than usual. They knew I was coming ahead of time and that I was potentially very ill. I was triaged as soon as I came through the door and they took me straight back to a room. Before I could even get up on the bed, there were several people in the room doing a hundred different things at once, or so it seemed.

Because they were concerned that my port was infected, they could not use it. That meant they had to start another IV in a peripheral site. Praise God, one of our former colleagues in EMS was working that day and she was able to get it on the very first attempt! Absolutely amazing! They were then able to give me some pretty good meds through my IV so that I was feeling a good bit better soon.

They did a TON of labs which quickly came back strongly indicating that I had a PULMONARY EMBOLISM, a blood clot in the lung. I also had a whole host of other abnormal labs. Most importantly, my liver enzymes were above 600 – normal being less than 50 - and my Lactic Acid level was high. This was definitely indicative of another episode of ACUTE SEPSIS, which is what I had back in April when I was so sick then. They really needed to do a Cat Scan (CT) of my lungs, with IV contrast, to rule out a clot. However, the size of the IV catheter that was used was so very tiny, it could not be used for the contrast. (IV contrast has to go in through a very large bore catheter and at a very high rate of speed. This can’t be accomplished with the little ‘baby needle’ they had in me.) They spent at least a couple of hours sticking and sticking me, trying to get that larger IV site. It never happened. Finally, it was decided that a Heparin drip would be initiated in order to bide time so they could wait until the next morning and then do a nuclear medicine lung scan because the tech for that particular study is not there at night, which I believe is completely ludicrous! But no one asked me, obviously.

While I was still in the ER, they also did a CT of my head and Venous Doppler Studies of both my legs to make sure there were no clots there. By the time I made it to my room upstairs, I was totally exhausted and it was already around 1:30 a.m! It was finally determined later on in day 2, after all the initial labs and scans, including the Nuclear Medicine Lung Scan, that I either never had a clot or that the Heparin had worked to dissolve it overnight. At that point, they started focusing more on the source of the infection.

I was ultimately in the hospital for 7 days on IV antibiotics. Praise be to Almighty God, my port did not have to be removed this time! It was ultimately determined that it was not the origin of the infection nor did it appear to be negatively affected by it at all. In fact, while I was in the hospital, they never could quite determine the exact source of the infection. They just knew that after they started the antibiotics, I was responding well. I quit spiking high fevers and I began to improve a little, day by day. It took me a while to actually ‘feel’ better. I was still extremely nauseated and had a some trouble keeping solid foods down and I also had a great deal of upper abdominal/mid-back pain. Additionally, my liver enzymes were still elevated, though they were inching back down and were much better than when I came in.

On about day 4 or 5, they decided to do an ultrasound of my abdomen. (You have to remember, this was over the July 4th weekend, so no one was getting in a big hurry to do anything!) On day 6, at around 10:30 PM, the GI specialist came in for the very first time and woke me up. I was in a daze but I gathered from what he said that my liver enzymes were continuing to come back down to normal and were now around 100 but that my spleen was now enlarged. He had no idea why, so he had scheduled for a Hematologist to come in to do a consult with me for the next day – the day I was expecting to go home. Humph!

Very early the next morning, the hospitalist – the main physician who had been coordinating all my care while I was there – came in to see me. She said that all my labs were looking really good and that she was not too concerned about my enlarged spleen. She said she did not see any reason to keep me as an in-patient in order to follow-up on it. She agreed to discharge me with the understanding that I would follow-up with my primary care physician within a few days. I eagerly agreed and after a couple hours of waiting on all the necessary paperwork, I finally got to come home! It was so good to be back home after being in that place for 7 days! It was an awesome feeling to finally get a real bath and get in my own clothes but it really wore me out quickly.

Not long after I was home, I started experiencing even more pain in my upper abdomen and mid-upper back. I still could not eat much at all without being full and very nauseated almost as soon as I started to eat. After contacting my Primary Care Physician, I was scheduled for a follow-up abdominal U/S and labs. Once the results were in, it was finally determined that in addition to whatever bacterial infection I had that made me septic, I also have MONO! That turns out to be the cause of my enlarged spleen. My spleen being enlarged is probably causing, or at least contributing to, why I have been having so much more nausea and vomiting and why I do not feel like eating much. There just hasn’t been a lot of room for my stomach!

I am so very thankful to have finally gotten a definitive answer to what all is going on and I’m glad it was nothing to be overly concerned about. However, I do have to chill out the next couple of months –as if I have anything else planned anyway – and try to recuperate from all this. Mono can take anywhere from several weeks to many months to recover from. It can be especially difficult for anyone who is especially young, elderly or already immunocompromised.

It has been a couple weeks now since I’ve been home from the hospital and I’m still having a good bit of trouble eating, being extremely nauseated when I do eat and I am constantly fatigued…even more so than I already am chronically. I hope to see some improvements really soon. Please pray that I do!

Until next time.....