Sunday, September 17, 2017

Update After Surgery

I'm adjusting. Slowly but surely I am walking a little more sturdy thanks to the rollator. So thankful for it. Nice to be able to sit when I'm worn out. I saw my home health care team for the last time. Slowly but surely I'm readjusting to being alone every day. This is the hardest adjustment of all. I can take the pain because I live with it all of the time. But adjusting to being totally alone is hard.  It is worse during the holidays, but at least I'll have a couple of months to prepare myself.

I'm slowly adjusting to new ways of doing things. New tricks to feeding my cats, doing laundry, washing dishes. But the lupus fatigue wipes me out before I can accomplish two things. I've learned to be thankful for one.

Slowly but surely I'm adjusting to the idea of getting a power chair and having to use it daily. Won't have it for two to three months because of insurance red tape. Gives me time to hopefully find a kind soul to build a ramp. Since I don't own where I live, it would be better to buy a portable ramp from Lowes, but I can't afford one. And I'll still be stuck pushing the walker or rollator when I go to the doctor because insurance won't cover a lift.

Slowly but surely lupus is beating my body to death. I'm thankful for one day at a time.

Monday, September 4, 2017

Prayers For Needs and Other Things

Tuesday is my next Benlysta infusion at St. Joseph Hospital. I can tell I'm running on empty. Stress, healing, making ends meet,  just trying to function day to day have all drained me dry. Doesn't take much to get wiped out.

Today I realized I've had three surgeries in less than seven months. My body has taken a beating, but hopefully will show some good signs. Two eye surgeries were worth it just to see better through  my right eye and bring the glaucoma pressure down in both. Now just recovering from spine surgery has had its own set of stresses. Expenses, new additions (shower additions, bathroom additions, bedroom additions, etc.) to live with the new limits I now face, the out of pocket expenses from this past surgery, and expense of life in general all accumulate over time. At times it feels like I'm gonna burst. Even though time will heal my spine, life with systemic lupus will continue. I've slowed down to a crawl. If I accomplish one thing a day I'm excited about it. So many times I wish I could go back in time and somehow prevent all of this damage from this horrible disease. That includes financial damage as well. Since that is not a possibility, I just take one day at a time.

 Just hoping for some peace.

For all of those who helped me meet the expense of the needs I've had, thank you from the bottom of my heart. For those who remember me in your prayers, I am so very thankful for you. Thank you for making a difference in my life during all of this!

Thursday, August 31, 2017

Thankful for Ibuprofen

Never really cared for over the counter medication. Never cared for medication of any kind before I became ill. Since having spine surgery four weeks ago I learned what medications work and what don't for me. Ibuprofen keeps down the swelling and the intense pain of inflammation caused by systemic lupus. Had to stop taking it two weeks before surgery because it affects bone strength and development after surgery in some way.

It has been a very painful six weeks without it! Lupus has flared repeatedly along with the pain in my back. When I'd flare my back pain increased. When my back pain increased, I'd have a flare. Endless circle.

Today I saw the surgeon for the first time since having the surgery. So impressed with this doctor. I had told his nurse how much I was suffering from flares without the ibuprofen. The first thing he said was go back on the med since I was suffering so much. With the inflammation going down, my back would feel better.

Also said I was healing fine. The fall I experienced the other day didn't do any damage. So thankful! My legs just melted out from under me and I fell on my knees. They're sore and blackened some, but not bruised. Usually shows up a few days after. And yes they hurt. I think I'm getting use to being the floor's best friend. I've fallen more since January than all the times I've fallen over the past two years.

He gave me x-rays of my spine and I thought I'd let you see what it looks like. He took out a disc and replaced it with a spacer. Put in screws and metal to hold the rest in place.

Even though I'm doing okay in the healing from surgery, lupus has hit me hard over the past few weeks. The damage of now 24 years has taken its toll. The surgeon told me I wouldn't have to use the walker forever because of my back unless I fall. With lupus I have grown more unsteady with standing and walking and have fallen frequently. The surgery may not cause the walker to become a permanent part of my life, but it looks like systemic lupus will. My Occupational therapist is working on other items and ways to manage the changes in my life. Simply put I just can't do what I used to do. My back will heal in time, but the lupus damage won't.

Tuesday is Benlysta infusion day. I can tell I'm running on empty. The exhaustion from systemic lupus has been a huge increase in my life the past two weeks. Rain is affecting me more. Any kind of stress knocks me off my feet. Even though Benlysta wipes me out for a few days, I'm thankful for the benefits I see.

Thank you all for your kindness and love. Thank you for your generous help in dealing with all of this. I couldn't do it on my own.


Monday, August 28, 2017

One of those Days!

Just want to scream! The rain has set in here and my body is one huge swell of unending pain! Went to the rheumatologist today. As usual she just took notes and handed me prescriptions. Didn't even ask about the walker I was having to use. I had to bring up the surgery I just went through recently. I just don't get it. It isn't like that office is over run with patients, but she always appears to be overwrought from going from one to another. 

The only benefit from today's doctor's visit was getting advice to use Aspercreme with Litacane. Stuff worked immediately. Unfortunately I can't take a bath in it. Without any anti inflammatory in my system, I'm swollen and suffering inside. Four more weeks of no anti inflammatory medications. 

Was so wiped out when I arrived home only to find a message from my occupational therapist. She was on her way. All I wanted to do was go to bed. It was after 6:00 p.m. before I could rest. 

My next door neighbors loaned me a bedside potty chair that easily fit over my toilet keeping me from having to sit so low I couldn't get up. In fact it was perfect height, had just enough width between arms, and is sturdy. After having to send one back because it was just too narrow, my OT called another place today and hopefully has found one where the arms lower enough so that I can fit into it. This will be a long term problem solver since lupus has worsened the condition of my body. I just can't get up and down like I use to. I called my neighbor today and asked where they bought the one I'm using. Unfortunately it was purchased in 1996 so that model is long since gone. 

The medical staff has requested a power chair for me. The man in charge is coming on Tuesday. Now I have another worry to add to my list - a ramp. Of course the OT thinks a portable one (folds up, made of metal, goes where I go) would be perfect. Isn't covered by insurance. Lowe's has them, but they are in the hundreds of dollars. Not an option. Will be so thankful when things settle down and I won't have to worry about all of this stuff anymore. Prayers will have to do for a ramp since I don't have a clue as to what to do about it. Where I grew up when someone was in need of something like this a church would gather supplies and volunteers to build one. No such luck here.

Of course one more thing had to happen. My vacuum cleaner died. Motor appears to have burned out. Thankful Julie tried to fix it, but it just wasn't worth it. So now I need a new vacuum. When you have an indoor cat you have to have a vacuum.  So today I had to order another vacuum. More money spent I didn't have.

In case you didn't know stress is the number one thing to cause lupus flares, damage, pain, etc. Seems like I've had a month of stress. I just hope September is better. 

Am so thankful to my friend RB who purchased the shower transfer chair. Last night I was able to sit securely and take a bath safely without fear of falling. Thank you so much RB!

Friday, August 25, 2017

Awful Week

It has been an awful week physically, mentally and emotionally. Started with a terrible lupus flare spurred on by inflammation from the surgery. Still can't take an anti-inflammatory because of the surgery so my body is fighting me with overwhelming pain and swelling in joints and all over body areas.

Went to regular MD Monday. He had a physician assistant training. She checked me first and was shocked at how swollen I was. When the doctor came in he didn't even notice. The PA had to point it out. Said he could give me Prednisone to get the flare under control, but would rather my surgeon do it. So walked out as sick as I walked in. I don't see the surgeon until next Thursday. This doctor does two things: write prescriptions and keep records. Problem is so does the rheumatologist. So neglect has not been uncommon from doctors here.

The home health team signed me up for A physician's assistant sees me once a month at my home taking the place of the regular MD. I still have to see the specialists. She came Tuesday. Was fantastic. Saw how swollen and in pain I was and after hearing my story from the previous day immediately called in a prescription for Prednisone. She said there was no excuse for it. I just cried. So many times I wish I could go back home and resume as a patient to my rheumatologist there. He was the best and I was stupid to move. The home cleaning assistance I received in Alabama was so valuable. Here in KY you have to be 60. No provision for permanently disabled. It has been so hard physically.

Next came the hunt for a used tub transfer chair. My OT said it would be a permanent addition to my life because of the lupus progression. I put out a plea three times hoping someone could help because it cost $60 and not covered under insurance. When I gave up, a friend came through. It was ordered yesterday. Thank you God for divine intervention!!

I also was told I would have to use a power wheelchair due to my declining condition. Thankfully insurance covers it. Waiting for paperwork to come through and someone to come out and measure me for a chair.

And the latest was yesterday's potty chair fiasco. The OT called the surgeon to call in a prescription. One week later no chair. She called again. They had been waiting for me to call them to get an ok. So Thursday was going to be delivered to my door. I went out for awhile to get away. Upon returning there was a message from the pharmacy checking to see if I would be home for them to deliver. Asked me to call. When I did they said there had been a mistake an feed it would be Friday before they could deliver. I was exhausted and decided a nap would be good. As soon as my head hit the pillow someone knocked on my door. It was the chair delivery. He said there was another mix up and they should have called. All of this took place in fifteen minutes. Keep in mind this is a small pharmacy. Few people run it. Not complicated.

Last night I adjusted the legs to put it over the toilet making a sturdy raised seat since it would become a permanent part of my life. Problems again. It was too tight and the seat too small. It was the last straw! Kept me awake from stress all night. I called this morning and told them it was too small. Even looked like a toilet for a smaller person. She told me that chair was designed for someone up to 350 lbs. Impossible! I'm not anywhere close to that number and I can't sit in it. All she could do was call and find out what to do.
What are they thinking?!?! I have no doubt they ordered the wrong size. I can't use it so they have to figure it out. I told her the chair I received was for a smaller person. No way is their weight chart right.

I've had help getting items for safety sake. Much needed help. However I have paid for quite a few things that weren't covered by insurance and it has drained my finances terribly! Sad when you're counting change to make it through to September 3. I feel like I'm drowning.

My next need is finding someone who can build a ramp for the power wheelchair. No money, no clue on how this will go. Churches here don't do things like this. Another thing I miss about Alabama.

And doing this with no family makes it twice as hard. Stress causes lupus flares, flares cause off the chart pain which involves the spine surgery, which keeps me awake, which also stresses me out. Catch 22. Ready to get off this crazy roller coaster and find some peace in the day.

What a week!! The good part has been a taste of fall weather. So crisp and cool in the morning with temperatures in the 50's. Nice cool evenings to sit on the porch when I can.

Will be so glad when everything falls into place. Now if I could just get rid of the stress!

Friday, August 18, 2017

Update and Need

Just an update. I'm home and set up with home health care. My occupational therapist said I need a shower transfer chair due to my unstable condition. Can't find one used and insurance won't cover it. Costs $60. If you can help in anyway, we both would be appreciative.

Monday, August 14, 2017


So thankful to be home. May not be much to some, but I'm thankful for home.

Staples came out today. No numbing the area. Just took pliers and pulled them out. Hurt like crazy. There were 16 Staples.

I'm focused on one thing - rest. So exhausted since coming home. All I want to do is sleep.

Thank you all for the prayers!