Wednesday, April 30, 2014

UPDATE

Having a catscan on the lymph node next Tuesday and follow up doctor's appointment afterwards. Checking to see if it is cancerous. He did not want to do a biopsy because of location. Would have to cut my neck to get to the node.

Can I say I'm sick of doctors and tests now?

Tuesday, April 29, 2014

Feeling The Pain!

I'm feeling the pain of this weather! When the humidity shoots up, the "elephant" sits on my body! It hurts! Rain is coming back tonight and a cold front Thursday. Amazing! 

It was warmer today. Reached 80 degrees. I had to get out to pick up a CD of my test results to take to the doctor tomorrow. So we wandered around Goodwill and ate lunch then picked up some food from Walmart. While out I saw a turtle cross the road (made it across - people were kind!) and a goose sitting on the side of the road. No babies though. Horses were out in full swing. Seems like there are lots of babies this year. 

I feel the pain of withdrawal as I'm taken off a medication. Have been taking it over 15 years. Adjusting to the cymbalta is hard, too. I wake up in the morning shaking all over. Will be glad when readjustment period is over. 

Tomorrow is my doctor's appointment. The swollen lymph node is still there. The small thyroid, too. Will be interesting to find out what he thinks. Just want some peace in knowing this node is not cancerous. 

Have realized today I need to find another place to live. I can't go through another freezing winter in this apartment. College and Seminary people are wrapping up for the summer so hopefully many places will be open. Worries me that I don't have enough for a deposit. Most renters want first month and deposit upon agreement to move in. So I'm praying for an open door and deposit/rent. 

My appointment is at 8:45 a.m. in Lexington so I'm heading to bed early and pray I can sleep.

Monday, April 28, 2014

Doctor Visit Wednesday

I'm heading out to a new doctor on Wednesday. Since the swollen lymph node is undetermined and my thyroid is much smaller than expected, they're sending me to an ENT.

At first I thought this was an odd choice for the circumstance. Did some research and found out ENT doctors do thyroid surgery. As long as he can biopsy the lymph node we're fine.

I started thinking about how life can turn on a dime. You never know what a day will hold. Life is fragile and fleeting. No one plans to get up one day and find themselves in the ER, waiting to see if they have cancer, or even dying. It all happens so quickly.

We spend our lives planning for the future. Work toward it. Yet all we work for and plan for can change with bad health. Mine did. I stopped dreaming of the future, praying for better things, hoping for good things to come my way. I've been beaten up by systemic lupus, fibromyalgia, plus a long list of other health problems. Sometimes I think it would be easier to just give up altogether because my life consists of just making ends meet, finding funds to pay for medication, pay for gas to doctors, tests, etc., basic needs, and day to day life. I have forgotten what it is like to wear new clothes, sleep on a mattress that is new and firm, and be able to sleep at night without worrying. I can't afford to buy a new mattress and box spring let alone a frivolous item for my apartment or myself.

All I hear in my head is "I can't afford to do it." Even though I don't need "stuff," it would be nice not to have to worry about it.

I ran across a website yesterday and found myself wishing my place was a pretty as this one. I've been to Shorter Mansion in Eufaula, AL before. Not that far from Dothan or Abbeville, where I was raised.

http://www.eufaulapilgrimage.com/page15/page1/page1.html

Just getting lost in the beautiful decor, table settings, beautiful tablecloths, placemats, etc., I almost forgot the sound in my head "I can't afford it." If there isn't a need, I can't do it. But it was fun to dream. Just amazes me how dreams fade away in the fog.

It was a cold, hard winter in Wilmore this past year. My apartment was freezing cold. I paid for the expensive cost of heat even though I was still freezing. Block walls just don't do it! I questioned whether I could survive another winter in this place. But yet again reality hit me in the face. I can't afford to move. I can't afford the deposits that come with moving or paying someone to move my belongings. It is just a fact. I'm stuck in one place. If I freeze in the winter, hopefully someone will find me before I thaw out. The good part about block walls is it stays cooler in the Spring and Summer. You don't have to turn on the AC until late May. Open the windows and turn on the fan. In Alabama I had to turn on the AC in March.

I guess I'm worried about what is ahead: the cost of this new lupus medication, what my test results hold, what new medical road I'm having to travel. Sometimes it would be so nice to be able to dream and not find myself disappointed for doing so.  But that's something I'll have to accept and work through.




 

Saturday, April 26, 2014

Dizzy Dreams, Easter, and Lupus Pain

As usual, I had odd dreams last night. I dreamed that I opened my mailbox and tons of letters/cards fell out. They came from all over the world. Each one held $10 - a blessing that really added up fast (and was needed). Each card read as follows: From God.

I can only imagine what that must feel like in my waking life. Perhaps I dreamed it because of the great financial need in my life. Perhaps I dreamed it as a reminder that God provides and takes care of me (and He does). Perhaps I dreamed it because I always look forward to the mail each day even though it is usually filled with junk and bills. Even so, the dream was wonderful, a far cry from the nightmares I've been experiencing nightly.

When I awoke, I smiled at such a possibility. Wouldn't it be wonderful?! Then I stood up and almost passed out. I've been dizzy all day, my heart fluttering in my throat, and feeling physically ill. Both hands are numb today so I've had to be careful when trying to hold the simplest of items like a cup or bowl. Since Dr. day is Thursday, I decided to crawl back in bed and suffer it out.

The weather has changed once again. Snowy morning and below freezing temps tonight. But soon Spring will return - a time of hope and promise. Easter is Sunday. Although I won't be going to church this year, I always worship Him. While families gather together for church and dinner afterwards, I'll be spending the day with Rascal and Buddy, and hoping Buddy won't snatch anymore baby bunnies from underneath the bush at the end of my porch like he did last year. Poor bunny! I tried to rescue him, but he didn't let me.

I remember Easters from the past. My mother always made a ham dinner on Easter. We ate together. It was the one thing she did so well - make holiday dinners. She was the true southern cook. My dad always bought my Easter basket. He stopped when I turned ten. It broke my heart. Haven't had one since. Sometimes I wish I had an Easter basket filled with goodies.

There is a robin singing outside my window. His repertoire is beautiful. Not one song the same. On a day like this when I feel alone in the world, it is a blessing to hear God's song bird sing such beautiful songs.

Time to go back to bed. Even though sleep won't come because of the pain, I will rest my head and remember the wonderful dream from the night before.

 

Thursday, April 24, 2014

UPDate on Scan, Dr. Appts and New Meds

What a day! Rheumatologist appointment went well. Turned in the paperwork for assistance in getting the lupus medication that costs $28,000 a year. No assistance, no med. Dr. faxed all the paperwork. Once approved (and I'm praying here), I will go into Lexington to the Infusion Center of St. Joseph Hospital once a month for an IV infusion. If this will relieve the extreme pain I am experiencing, I'll try it.

Added a new medicine today: Cymbalta for pain. Hoping this helps, too.

Received test results this afternoon. Undetermined on the lymph node. Thyroid smaller than normal due to medication over the years. Sending me to an ENT to determine whether I need a biopsy on the node. Never knew they were the ones who did this. Dr. office will call Friday or Monday with date and time.

The good part was no goiter. Now we have to decide what's going on with the lymph node. Still swollen and painful. One more medical bill! One more medicine! Yikes this is crazy!

My friend, Susan, took me in today. She's a retired nurse and understands all this stuff and that helps. We had a nice lunch at Cracker Barrel and walked around Hobby Lobby for a little while afterwards. When I arrived home, I couldn't stand up for a long time.

Wish I could sleep like Rascal. He crawls onto the back of the love seat and falls asleep immediately. My mattress is so old and so bad that I can get comfortable for an hour or two and then I have to get up. Turn it around every month. Wish it was one I could flip. Thought about buying a queen size padded mattress cover, but they cost too much. If I ever get ahead, I'll put some aside for a good one.

Rain is coming in tonight and I've felt the swelling and pain all day. My right wrist is wrapped because it feels so fragile. Dr. determined all of my joints were swollen today. With the rain coming in, the pain will keep me awake. Wouldn't it be nice to curl up on a bed that eased every pressure point?! What must that be like?

It has been a week of pushing myself with tests and doctors. I pushed myself today because I knew I wouldn't have to go back for two months. Now I have another appointment soon. When lupus is flaring (along with fibromyalgia), I have to see the doctor every two months. My other MD is every three months.

Wish I could be normal enough to sit in the sun just one day, but sitting in the sun would put me in the hospital.

Thankfully the day is over for me. I'll crawl into bed for as long as I can stand it, get up and sit on the love seat and swap back and forth until the pain subsides.

Tuesday, April 22, 2014

Scan Day - UPDated

Out the door for my scan. Not sure what it will show, but the lump is larger today. 

UPDATE: still waiting to hear results. Always a waiting game.

The woman who did my ultra sound said it looked like whatever this is is in the lymph nodes. She did a full scan of my thyroid and I had to show her where the lump was located. She stopped a couple of times and asked, "You have never had your thyroid scanned before??" Made me a little jumpy.

I've been hypothyroid since I was 16 yrs. old and taking medication for it. She said she scanned a lady before me who has been on the medication for a long time and hardly had a thyroid to scan. Said the medication did that much damage. I hate hearing stories like that. 

It all comes down to who reads the test and how much time he/she takes to really look at it. I won't worry about this. Just hope I don't have to chase down the results again. 

I've been sick since last Friday. Was in bed on Easter Sunday. My kind next door neighbors invited me to lunch, but I was too sick to get out of bed. So they brought me a plate of food. SO thankful! 

Tomorrow is my rheumatologist appointment and I still don't know what I think about her or her office. They don't keep up refills when requests are sent. I had to ask for the paperwork for the lupus medication. After gathering all of the info for it, I realized it required a prescription before mailing. So here I sit with the paperwork done and no prescription. I'll get it tomorrow. Three months wasted. 

If you ever have to deal with the medical field, you'll find yourself doing more of the work. You have to follow through, check on your prescriptions, make sure you have everything you need, etc. When I joked about being a "professional patient" due to my multiple illnesses, looks like I wasn't joking. 

So I'm waiting and will update here.

Friday, April 18, 2014

DOCTOR'S VISIT RENDERED A SURPRISE

Yesterday I had my four month doctor's visit in Wilmore. During the exam, the doctor found a lump in my neck. I thought I felt something a couple of months ago, but ignored it. There are far too many other things to worry about with my health.

He was concerned about this lump. It is approximately the size of a ping pong ball now and is bothering me. He said it could be a goiter since I have had thyroid problems since I was 16 yrs old, but he didn't want to take any chances.

I have an echo  Tuesday morning. He said we'd go from there. If it is a mass, well, we'll take it a step at a time. If it is a goiter, I go to an endocrinologist. I've been on thyroid medication for 37 years. However, the past six months or more, my hair has been falling out, my skin is super dry and my nails are peeling. I'm also so exhausted that I can function two hours before having to give up.

He asked me if I was experiencing hair loss. I told him yes. Funny thing is I've been telling him this for six months, but yesterday he heard me. Amazing how doctors are.

I can worry about it or look at it as a new adventure set to teach me about my hypothyroid disease. I'm not worried. I worry about money, financial struggles, wondering how much longer I can function on my own, etc., but a lump? Nope. Whatever comes with this lump, I'll take it a day at a time.

Life is filled with surprises. Some good, some bad. Endure the bad and become stronger. Enjoy the good while it lasts. Thank God for both.

Tuesday, April 15, 2014

THIS IS FAITH!

Spring Flowers Among The Snow and Freeze

Will be in the 20's tonight. Weather says it will be a long hard freeze. Gathered up my plants and brought them in. Harvested my tulips and daffodils to enjoy. Sharing with you.



 

SNOWY SPRING MORNING

Woke up to beautiful snow falling. Nothing like a Spring snow. Air smells crisp and clean. Big beautiful flakes falling. Thankful for a beautiful snowy day.



 

Sunday, April 13, 2014

HOMESICKNESS AND SPRING, EBAY

No matter how old I get, I still become homesick from time to time. It hits me when I least expect it. Even though it is heavier around the holidays, a simple dream can take me back to my childhood. No matter how bad things were, it was still home.

I've felt homesick a great deal lately. Unfortunately, going "home" is not an option for me because my family passed away nearly twenty years ago. Home hasn't been home for a long time.

A friend shared this on her facebook page. Brought all those tears to the surface again. I can't help but wonder if I were able to go back to the house where I grew up, would it help me heal from all the pain I experienced there? This song really touched my heart:

https://www.youtube.com/watch?v=nBgM5ZRzzjI&feature=youtu.be

Even though the grass is green (and needing to be cut I might add), flowers are springing forward and rain showers come out of nowhere, we are going to hit low temperatures once again in KY. The weather report said not to be surprised if we see snowflakes.  With the hard fall from 83 degrees to the low 30's once again, my body will feel the affects strongly. It will hurt!

******It is a hard month financially. Selling items on Ebay to buy food for the kitties. Please take a moment to look: 

http://www.ebay.com/sch/maryjcal/m.html?item=321378709172&ssPageName=STRK%3AMESELX%3AIT&rt=nc&_trksid=p2047675.l2562

I wanted to share Spring with you in some of my own flowers. If you don't get flowers, plant your own. So I did.


 

 


 

Thursday, April 10, 2014

Dreams, Determination, Flowers, Flares and Proverbs

Ever have dreams/nightmares about someone you don't know? Wonder why? Me, too. I keep having recurring nightmares about someone I don't know. It is the same person. The nightmares wake me up with my heart fluttering in my throat. They stay with me all day.

I've decided the only way to deal with them is to pray for the person in my nightmares since I know the name of the person. Must be some reason they are invading my nightly dreams. Before the dreams were so nice I'd have to convince myself they were dreams. Now not so much.

Hard thing is they bother me. A lot. No matter what, I'll never understand why this person keeps appearing nightly in my dreams. So I pray for them. I'll never know, but God does. Last night's nightmare was so bad I haven't been able to shake it.

Since my life has become so restricted, i.e. hard to walk due to extreme pain so I can't go for walks, the temperatures have beaten me up over the past few days, hard to function in order to do normal things, I get lost in books and sleep. Now I'm getting relief in books and movies since sleep has taken a nasty turn towards me.

Just know, person of my "dreams" - you are being prayed for daily.

It has warmed up some in Wilmore. Flowers are blooming everywhere. My tulips are now blooming! So are the daffodils. Even my peony is starting to sprout out of the ground. Hoping for beautiful peonies this summer. LOVE peonies!

 I finally decided to turn the heat off at night. It is cheaper to wear winter sleepwear and curl up underneath my electric blanket. I'm so thankful for both.

My lupus flares have spread to the skin once again. I woke up swollen with rashes all over. Fevers. Pain. Chills. The old "feels like I have the flu" feeling. I haven't eaten anything to flare or done anything to cause a flare. Sometimes the weather changing alone will do it. I am determined NOT to let this horrible disease steal my life. There are many things I can no longer do, but those small things I CAN do, I will. One day at a time.

I ran across a celebrity news show awhile ago. Made me wonder if all of these "celebrities" who have so much would give more and realize they didn't need all of the attention, multiple houses, multi millions of dollars, what a better world this would be. Can you become so obsessed with yourself that you fail to see someone suffering in your midst? Can you be so empty inside that you can no longer show compassion, kindness, and love? What a sad world we live in when we have so many who have so much ignoring those who are suffering.

Many people think if you give someone money who you know is in need, they'll spend it on drugs or alcohol. Here's how I see it: if I see someone in need, I will give what I have. After that, it is between them and God. We don't know what that person has gone through, what happened in their life, what happened during the day. It isn't our job to judge what they will do with it.

Jesus said, "Matthew 25:34-36 Then the king will say to those at his right hand, "Come, you that are blessed by my Father, inherit the kingdom prepared for you from the foundation of the world; for I was hungry and you gave me food, I was thirsty and you gave me something to drink, I was a stranger and you welcomed me, I was naked and you gave me clothing, I was sick and you took care of me, I was in prison and you visited me."

This one makes me think of celebrities and their events: Luke 14:12-14 He said also to the one who had invited him, "When you give a luncheon or a dinner, do not invite your friends or your brothers or your relatives or rich neighbors, in case they may invite you in return, and you would be repaid. But when you give a banquet, invite the poor, the crippled, the lame, and the blind. And you will be blessed, because they cannot repay you, for you will be repaid at the resurrection of the righteous."

Proverbs 14:31: “Whoever is kind to the needy honors God.”

“If anyone has material possessions and sees his brother in need but has no pity on him, how can the love of God be in him? Dear children, let us not love with words or tongue but with action and in truth” (1 John 3:17–18).


There are so many around us suffering due to a bad economy. Many who are alone in the world and only need someone to care. Why is it so hard to give help to others instead of becoming so self absorbed while drawing a circle around your family and not letting someone in? For those who are so greedy they just can't help anyone, let me remind you kindness and compassion do not come with a price tag. They are free and much needed. Don't help someone to promote your good works or make yourself look good. You've lost the blessing.

Heaven help me if I pass someone hurting, alone, hungry or in other need and not help where I can. Heaven help us all.

 

Wednesday, April 9, 2014

Tuesday, April 8, 2014

I Tried!

I had planned to go back to Bible study this morning, but as soon as I arose, the pain was horrendous! After a night of nightmares, I struggled just to pull myself up to my feet and walk across the floor. The severe pain in my back and joints controlled my day. I haven't been able to go to Bible study for weeks. Weather once again!

Spent this afternoon digging through old belongings to try to sell on ebay. After this month's gas heating bill and high electric bill (yes it was cold in KY in March), and the high cost of refilling medications, I'm down to counting change for food for the rest of the month. Sad when you have to choose: utilities, food or medications. Unfortunately, I cannot stretch the meds another month. Thus the severe flares! What do you do when you cannot do without any of the above?

Rain is returning tonight and cold temps still loom in KY. Since it is colder in my apartment than outside, by about ten degrees, I've spent the day underneath the electric blanket. So has Rascal. After looking at the weather forecast for the next eight days, it appears to be warmer until first of next week. Then the cold returns (freezing at night).

--------------------------------------------------------------------

I've learned something new today. You find time to do what you want to do. No matter what your schedule, you find the time somewhere to do what you want. When you tell someone your schedule is tight and you can't come by, is it really true that you never wanted to do it in the first place? For whatever reason, we tend to tell people we just don't have the time. Yet time is all we have. 

Don't turn away from an opportunity to spend time with someone. You never know if you are the only person they may see that day.

 

Friday, April 4, 2014

April Showers

As the saying goes, "April showers bring May flowers." However, April showers bring much pain to someone who suffers from systemic lupus plus arthritis plus fibromyalgia, plus so many other illnesses. We had quite a bit of rain come through the past couple of days and now the temps are going to dip once again. I feel every rise in barometric pressure. I feel every ounce of pain surging through my body.

Sometimes I wonder what I'm still doing here. It is so hard to deal with all of this on my own. No one to run to for help. No one to call when I'm in dire straits. I'm stuck dealing with everything on my own. As I sit here in the dark (too expensive to turn on the lights) I wonder why I bothered to move. While there are good things that came with my move to KY, i.e. quiet, no street boom boom car noise, no obnoxious people, etc., there is also more of the same. Once my "new girl in town" label wore off, I was back to being alone, wondering what day it was, struggling to make it through a day. Since this is a college town, it makes sense that it is a transient town. People come and go. But I will never understand how people can ignore someone who is so sick, alone in the world, and struggling.

Someone once said "I'm not like you. I need to be around people." Did she think I chose this? Nothing about my life today is something I chose. It comes with the territory of being sick and labeled. I need people, too, but didn't have a choice. I had to adjust to life alone. If it were the flu, people would be more caring because the flu only runs a short course. But when you have chronic illnesses, the kind that rob you of life, they don't want to stick around for the long haul.

So do I move or stay? People are the same no matter where you go. Would I be stuck in another town with the same uncaring souls? Is there a place on this earth where people love their neighbors, make a difference when they know there is a need, and stick with you through the long haul? I'm not sure there is a place.

Another stray kitty showed up on my doorstep last week. Poor little thing was missing some hair across his back. Still, he was so friendly and loving that I knew he had to belong to someone. This cat ate for a solid hour. He was starving. Who could do this to a poor little creature? In between bites, he chattered and chattered. I could almost hear him say, "yum, yum, yum....thank you." I relate so much to this little kitty. I know how it feels to be thrown away.

I felt a kindred spirit with this cat. How many people can walk around something so hungry, so lost and alone? Buddy picks on him. I could relate. I've reached the point I don't say much of anything anymore because everything I do say is judged. I wonder sometime if I don't talk much anymore because I'm not use to having anyone to talk to in this world. I keep the tv going just to hear another human voice.

What three things are important to you in a friend? This was a post on someone's facebook page. If I could answer, I would have said the following: accepting me as I am, Christian, doing what you say you would do. Odd? Maybe, but this is important to me. So many people I've come in contact with say and promise so many things, but never follow through. What happened to giving you their word and doing it? If I cannot do something, I'll tell that person and why.

I'm worn out trying to get quality health care. This week I had to call my rheumatologist's office to ask them to call in prescriptions. The pharmacy sent them a request two weeks ago and never got a response. I had to ask for the paperwork in finding funding for the lupus medication/treatment. It was suppose to have been sent to me in January. When I heard back from her nurse, she said, "I'm sorry. I didn't know." So who do you confront about this: the nurse who can't do what she's not told to do or the doctor who fails to follow through on everything? I'm still waiting for the x-ray of my right wrist. She mentioned that in December. I swore I would not chase after another doctor to make them follow through after having to do this in Dothan. Here I am again.

April showers are bringing flowers. I've had three daffodils bloom so far and still waiting to see tulips. I've seen the green leaves but no flowers. Instead of beauty, April is bringing showers of tears for me. The pain is horrible.

I hear the birds singing outside my window. They are winding down for the night. Perhaps I should do the same.