Monday, September 16, 2019

ASKING FOR PRAYER

I've been in Iowa for a month now. Nicest people I've met in a long long time! Every person I've had to deal with involving insurance and other issues have been very nice and very friendly. So different from KY. The doctors I've seen have been compassionate and know what they are doing. I am blessed so far.

I saw my new glaucoma doctor last week. I was very nervous knowing I'd have to pay out of pocket for the twenty percent medicare does not pay. She did the exam and ran a couple of tests. After the exam she said she would wait until my next visit to do the other tests because they were so expensive and she didn't want to put that burden on me to pay. Turns out the woman who checked me in told her about my insurance situation. She wants to wait until the second part is approved so I won't have to pay for the extreme costs even though they get pennies if I do. When I checked out they didn't charge me a dime.

Compassion. Something I didn't experience in the medical field In KY except for a couple of people.
The first doctor I saw limited his tests for the same reason. I did have to pay 20% of that bill, but no tests. 

I see my new rheumatologist next week. As of today I have missed two Benlysta infusions. August and September. I moved before the first one and had not been able to get in to see a rheumatologist for the second. Also even though my secondary insurance covers very little of the cost, it covers some. If I had an infusion today it would cost me $3400 per month out of pocket. It would be impossible for me to pay it as my monthly income doesn't come even close to what they charge. Medicare covers 80%. The 20% comes out of pocket with no secondary insurance. Each infusion costs $17,000. I don't qualify for Medicare secondary insurance because lupus isn't covered under their eligible illnesses. Yes I talked to an insurance person about this. I simply don't qualify and if I did it would cost over $500 a month. So I applied for what I hope I can qualify for, wait and pray they come through before the end of September or I will have to do without medication another month as payment doesn't start until a month later. 

Has it affected me? YES. For every day I do one things whether it be unpack a few boxes, grocery shop, or just get out of the house I end up bedridden for three days or more. There is no medication suppressing the overactive immune system attacking and beating up my body. I can tell a difference in the way I struggle to breathe, low ability to walk a few steps and stop, be able to sleep because the pain is unbearable, shaking all over, swollen painful joints, irregular heartbeat, etc. With the longer period where lupus attacks my organs it will do more irreparable damage. I can honestly say Benlysta does work and did help. I've been a physical mess since going without it. 

Standing by my rule of thumb I have to remind myself I've done all I can. Just have to turn it over to God and let Him come through. 

This post is asking for prayer. Please join me in praying these insurance people will process my application soon and I can get back on track with my monthly medication infusions. Remember where two or more gather together and ask He is there among them. I am also praying for peace to deal with the overwhelming pain I'm having to deal with at this point. A friend said the other day she knew how much I suffer without this medication. She is absolutely right. 

I am asking for one thing. Prayer. Thank you for your prayers. There is no greater power.

Friday, August 30, 2019

UPDate from Iowa

So many things have been delayed since moving to Iowa. Did finally get my ID and new certified copy of my birth certificate. But have to wait a month on a rheumatology appointment so I missed the next Benlysta Infusion. I've had one flare after another. Been in bed the past few days because the pain is so bad. Remember the pain management doctors finally found the right medication to stay ahead of the pain so it isn't the medicine. Benlysta suppresses my immune system because lupus is overactive and attacks my body. I can tell a difference not having it. Boy can I ever!

I see a new Rheumatologist Sept. 24th. From his feedback he seems like a good doctor. Also a neurologist to finally read my MRI from February. He has five star ratings so hopefully he can tell me more of what I face with white matter disease.

Thank you all for your prayers. They are still much needed. Still waiting to hear if I qualify for extra medical cost assistance and will be paying 20% of doctor and medical costs out of pocket until then.

Saturday, August 17, 2019

A New Beginning

I've made it to Iowa. Have been suffering from systemic lupus flares one right after another. Sporting a bright red lupus rash on my hands and arms. Fevers, swelling, pain galore. Saw my first doctor this past Wednesday. Will have to pay 20% out of pocket to see my doctors until I find a supplement compatible with my medicare. That means $135 every month comes out of my deposit to pay to Medicare,  high price on medications, and 20% of all doctor bills until then. 

The reason I'm having problems getting a supplement is I have to have an Iowa State ID.  The day after moving here I went to the court house to get one. Was told my original birth certificate was too old and the certified copy I've had for years now is hard to read.  Never had a problem with either when I did my AL and KY state ids. So I had to order another. One week later I was emailed a request to verify identity. So I did. They had my last name misspelled. Now it is going to be a total of two weeks waiting to receive the  certified copy before I can get a state ID. First big problem. When you move you just swap one set of problems for another. 

Before I moved Polly experienced a cracked pipe in the basement and had to take care of it. Last  Sunday the drain was clogged and flooded the basement ruining the most expensive gorgeous carpet ever that was included in the house. Thankfully she found out insurance would replace the carpet. Dealing with insurance agents can be a pain in the behind. 

When I saw my first doctor he made the statement that  I was a mess inside. I agreed because I already knew it. Just held my breath and hoped he would take me on anyway. He did. Set up my first glaucoma doctor appointment for September 12th in town. Waiting for rheumatologist and neurologist to set up an appointment in Des Moines. I was due to for a Benlysta infusion on Thursday, but a rheumatologist  has to set it up. So it looks like I'll miss this month's infusion. I can tell a huge difference. The pain is out of control and I'm having flares repeatedly. 

Made a huge dent in the boxes around the place, but have a ton more to go. Just going to be the way it is. I can't move any faster and I have to take long breaks in between. 

When I said yes to this move I felt a huge weight of worry fall off my shoulders. I already knew God swung this door wide open and has provided along the way. I know He will continue to do so. Still need your prayers. Please ask Him to put me with the most knowledgeable and compassionate doctors. I had my fill of rude, uncaring, awful doctors in KY.  I'm due to find better.

Bitty is settling in well. She has a huge bay window in the living room to watch the birds, squirrels and people walking their dogs and she loves it. When it snows she will have  a full view while she sleeps on the blanket I put in the window seat. 

Buddy. My Sweet Buddy. I miss him terribly. I tried so hard to catch him and put him in the carrier, but to no avail. Thankfully  my friend, Rosemary R., searched for help in Wilmore and found an organization that captures cats, has them fixed and releases them. They were able to catch Buddy, Fluff and Bambi (The two cats abandoned three months ago) and rehome them to a barn in town.  They say they're  eating far better than I fed them. The next task was to catch Boots, have him fixed and released.  They said someone would come to his area and make sure he had food and water.  They were my joy. When people ignored the disabled sick woman in the duplex, these felines loved and visited me on a regular basis. They were my family.  Always will be. God created every animal and person on this planet. He gave man the job of watching over His creation and caring for them. If you're not doing it, shame on you. My daddy told me once "You can tell the character of a person by the way an animal responds to them." That has held true in every incident I've experienced. You can't fool the instincts of an animal. There are many many days I'd rather be around  animals than people. 

I thank God He blessed me with BItty. 

My medical bills will be expensive for the first month (see information at the top of the page). This includes higher medications until I can find another supplement. If you can help please know what a huge difference you are making.  All prayers are so needed every day. Thank you all those who have helped and prayed. You have been my lifeline and helped to restore my faith in man again. 

Always praying for you as well. Thank you so much!!

Tuesday, July 23, 2019

THANK YOU!

PLEASE NOTE: Stress makes lupus and other illnesses flare. I was once told moving stress is equivalent to a death. It has held true to me every time I've moved over the years. Having lost my entire family to death I can relate to the stress there as well. Even my eyes are in pain from the glaucoma.

Thank you all for the wonderful support you have given both in my expensive medications and the help in moving. I cannot thank you enough for all you have done. God has truly blessed me with loving caring friends across the US and I'll be eternally grateful for your care and prayers.

Late Sunday night I had a diverticulitis flare and it has wiped me out. Everything I planned to do in packing has come to a screeching halt because of the swelling, fevers and pain. Again I will have to rest today and try to get my strength back. The side effects I received from Benlysta this past weekend combined with a diverticulitis flare has knocked me down to nothing. I can get out of bed for a short while before wiping out. I thank you for your prayers and hope you will continue to pray for me. As always I am taking one day at a time.

It has been a long seven years in KY and I am looking forward to moving to Iowa. God has some great things ahead because He opened this door. I look forward to hope again. Hope for better doctors, hope for not being a prisoner of the indoors all of the time, hope of not having to spend another Christmas alone.

Even though I am exhausted, I am hopeful again. Thank you for being a part of that hope!

Sunday, July 14, 2019

Just an Update

I've been so physically wrung out exhausted due to packing and my body running low on Benlysta that I decided to stop today. Do nothing. Rest. Sleep. Dream. My infusion is Thursday and I pray it will go easy on me. Sometimes I have insomnia for days. Sometimes it wipes me out so badly I can't barely get out of bed. Sometimes my body revolts and I'm in the bathroom way too much. 

Please add me to your prayers that I may be physically able to finish this packing. As you know with packing comes sorting and cleaning out. With Julie's help (I couldn't do it without her) I hope this job continues to go smoothly. She's been an angel in helping me. That's one common thread with Asburians (Asbury University Graduates). No matter when you graduated there is a hidden bond. We always help each other while helping others whether it be a listening ear or physical help.

 I have been truly blessed with the help all of you have shared from financial assistance to much needed prayers. Thank you!

Saturday, July 13, 2019

UPDate from Mary

Take two. I started a post and it disappeared. Let's try again.

Packing boxes every day. Hoping today I can free up some floor space. I've fallen twice in the past two days. I'm having an old fashioned miserable to lupus flare with fevers, swollen body, extreme pain and exhaustion. Waking up at 2:00 a.m. and not going back to sleep. Insomnia is a part of lupus unfortunately. My mind is exhausted. I've applied my new life rule to this move. If I can't do anything about something I let it go for now. No worry. Do what I can and stop. Thankfully my friend, Julie, has done a lot of packing for me. I don't know what I would have done without her.

Poor Bitty! She feels like she's been invaded with so many boxes and a person who happens to be in the room where the litter box is. She's a character. Can't go to the potty with someone in the room. I opened the guest room door so that she could sleep on the futon and she's been very happy there. She's out of the way and can sleep.

I'm taking Buddy and Bitty with me of course. I'm concerned about Bambi and Fluff. Bambi is an orange tabby girl who has been fixed. Sweet as can be. Her shadow is a black long hair persian whom I can't tell the sex of because there's too much hair. The neighbors split a couple of months ago and he threw them out like yesterday's garbage. Not fed or cared for them. There was a young girl tabby, but I haven't seen her in a while. Just hoping someone adopted her. I call the black long hair Miss Fluff. She's/he's been fixed also. Sweetest babies ever. They are extreme buddies staying together and protecting each other. I've been feeding them. I can't bear seeing an animal starve. God gave man the task of caring for His creation, not throwing them away or neglecting them. I'm so worried about what will happen  to them after I leave.  There is another cat who eats breakfast with Buddy. He's a gray tuxedo cat. Even though Rascal was a black tuxedo this cat reminds me so much of him. If I had the room to transport them, I'd take them all. But I can't so they will be left to fend for themselves. Breaking my heart into! I refuse to call animal control and send them to their deaths. What is their crime? Being alive and unwanted. If you know someone who would like to give them a home, please let me know. Fluff and Bambi need to stay together. They have been indoor and outdoor cats for years. You'll never find two more loving kitties. I named the tuxedo Boots because of his white feet. He needs to be fixed, but is otherwise very healthy. He comes from down the street so I don't know if he has a home or not. I enjoy their company. While living here I rarely ever get a visitor. These sweet felines have been my company and support for many years now and I'd be more at peace if I could know they are cared for and loved. Would you pray for this? May sound silly to some, but God created them just as He created us.

I'm exhausted already and it isn't 8:00 am. Have to take time to update my prescription refills today. Have been juggling medicines because the cost of 32  refills have been overwhelming. I've had to cut pills in half to make them last. I'm sure it hasn't helped my condition one bit.

Please know how very dear you are to me. I am so thankful to call you all friends and for the prayers and financial help you've given to me. You'll never know how much this has helped.

Thank you!! Have a good weekend. I have to crawl back in bed. 

Tuesday, July 9, 2019

Thank you for Your Prayers

Just when you think God has forgotten you, He shows up big time with a miracle! I'm moving out of state the first week of August. I've been extremely blessed by a dear college friend who bought another house three blocks from her house. She wants me to live in it for less the rent I pay now. She lives in Carroll, Iowa. She's coming to pick me, Buddy and Bitty up on the first week of August. I'm at peace with saying yes. I'll not be alone anymore at holidays. If I get very sick she's just down the road. With Buddy and Bitty being the only cats that will cut my food cost to more than half.

I'll still need help with medication costs especially before I can get additional insurance in place. Any help would be needed and much appreciated. If you would like to be part of this wonderful miracle and help with moving costs please know how much it would be appreciated by both of us. We're just a few weeks away from moving. Cost of UHAUL, guys to move, gas and food for the trip will add up quickly. If you can contribute one time to help this endeavor please do.

With the heat bearing down on us in KY I can only imagine how bad it is for my friends in Alabama. I remember well the extreme heat and humidity. We've had a big taste of it here as well. Hard to breathe just opening the door to get the mail.

Please know how much I have appreciated your financial help in paying for my ever expanding number of medications. Also for the much needed prayers. I wanted you to know your prayers are being answered.

Sending you much love!