The Beauty of a Moment

imageNow that my body has gotten a break from the IV antibiotics and I am feeling a bit better, I have been enjoying being able to look outward at the beauty all around me. This weekend I was fortunate enough to go to my friend’s house in Allentown, PA. He has an exquisite piece of property with absolutely no houses behind him but rather fields, trees and sky for as far as you can see.

I stood out on his deck and marveled at all the magnificent Autumn colors around me–green, yellow, brown, orange, red. I never noticed these colors the last few years because, quite frankly, I was too sick to care. It was such a special moment being able to stand out there being fully there to marvel at the beauty surrounding me.

Tomorrow I start an intense regimen of antibiotics so the moment I had at my friend’s looking upward and outward without any pain, fuzziness or fatigue may not last. But I am thankful nonetheless–even if it is just for a moment.

Transitioning to Oral Antibiotics

Out at Longwood Gardens with a friend celebrating the removal of my PICC line

Out at Longwood Gardens with a friend celebrating the removal of my PICC line

I never thought it would get here but I made it through 9 months of intense IV antibiotics. This is a cause for celebration! Thank you to those of you who have helped me get there through your prayers, financial or physical support.

Now that I have finished the IV protocol, I am being transitioned to the next phase of my treatment, which is a pretty potent oral antibiotic regimen. My doctor says that he has gotten enough of the infection out so that I can be transitioned to the oral-only protocol but that the infection is not to the point where treatment can be stopped. He says I will be taking these for another year to year-and-a-half. He explained that we need to keep whittling away at the bacteria that go into hiding so that they can never build up enough to cause me problems in the future. I only take the antibiotics on the days that the bacteria are actively replicating. Thus, I get 18 days off a month. I will do this for 3 months at a time and then go back to see him after each cycle so he can keep a watch on me.

Some of the many antibiotics and supplements I am taking this month

Some of the many antibiotics and supplements I am taking this month

I have started my new regimen and notice that I feel fairly good during the time that I am not taking the antibiotics but feel fatigued, achy and cloudy on the days that I do take them. Although this is a nuisance, I am grateful for how far I have come as well as for the fact that the antibiotics are helping to clear out the infection.

The overwhelming fatigue where I pretty much spent the whole day in bed in my pajamas is no more. To think that there was a time when taking a shower or styling my hair felt insurmountable seems surreal.

Goodbye IV supplies..I sure it's forever!

Goodbye IV supplies..I sure hope it’s forever!

In addition, I remember when I had difficulty going down the stairs because, due to my balance issues, I was afraid I was going to fall forward or at the very least tilt to the back or the side. Now I wake up in the morning and do not have to be focused on this.

I go to bed in the evening and do not worry about whether I am going to sleep through the night. If I do wake up, I do not wake up with the same terrible anxiety or night sweats that I used to get. They happen occasionally but they are nowhere near the intensity.

No more showers with a cast protector covering up my hand and arm!

No more showers with a cast protector covering up my hand and arm!


I also used to have problems with swallowing. I knew I needed to swallow but I could not get my brain to make the connection to the nerves and muscles. Now I drink and eat without thinking about it.

Entering this world of chronic illness and suffering has caused me to get connected with two different Lyme disease organizations—one at the state level and one at the national level. Both host medical conferences for healthcare practitioners. Being involved in this way has given me the opportunity to use my nursing knowledge to enable nursing attendees to receive continuing education credits after the completion of the conferences and to learn the latest information out there.

Sending off my extra saline flushes so that someone else can be helped

Sending off my extra saline flushes so that someone else can benefit from them


Going through this difficult health journey and volunteering in this way has allowed my story to be published in local newspapers and a magazine and to be interviewed for a blog talk radio station.

I share this so that you know that this disease does change you but the fruit of that suffering is the ability to stop, look and listen to others’ suffering in a way you would never have been able to do before. There’s nothing like being comforted by someone who’s been there and knows just how hard it is.

My unused IV tubing gets packed up so someone else can benefit from it

My unused IV tubing gets packed up so someone else can benefit from it


Then it causes you to look outward and find the role that best allows you to be part of the fight for better screening, treatment and insurance coverage. You might notice that you will start getting involved with a local Lyme support group or volunteer for a state-level Lyme Association. The more you get educated, the more you will be able to help yourself and be an advocate for others.

God does not waste pain. Hang in there. It’s taken me a LONG time to get to this point. I am not well yet, and I do trust that I will continue to improve past the point that I am at now. But it is nice to be turning the corner. Like I said, it’s been a long time…

My Lyme Story: Month Nine

Dr. Jemsek and I at my 9 month appointment

All smiles with Dr. Jemsek at my 9th month appointment

It’s been a while since I’ve posted an update on my progress but I am excited to share some good news: my PICC line is out! Last Thursday, after completing my ninth month of IV antibiotic treatment I visited Dr. Jemsek. After examining me, he announced his confident diagnosis that the infection had been subdued enough to warrant the removal of the PICC line and the transition to oral antibiotics. Needless to say, I was ecstatic to hear those words!

The removal of the PICC line

The removal of the PICC line.

Even better, he told me the nurse could do it right there in the office. Initially I was terrified it would hurt but was relieved when the process turned out to be painless, although I could feel the line coming out. And the anticipation of washing my hair and taking a shower without a bulky cast protector was incredibly encouraging. Ah, life’s simple pleasures!

Best of all, a new phase of my journey would be unfolding.

Still, Dr. Jemsek was quick to remind me the oral antibiotics are required for another year to year-and-a-half because even though the infection has been severely weakened, it still needs treatment.
 
While I clearly see improvement, it is evident I am not yet out of the woods. I still experience some of my symptoms but not at the same intensity.
 
I wish I could tell you this journey is easy and quick, but unfortunately it is not. Anyone who endures can take heart that they’ve been blessed with incredible strength. Keep the faith and keep on fighting!

It’s a Marathon not a Race

imageIt’s always interesting when your doctor tells you, “This will be the hardest month.” I saw Dr. Jemsek for my 6-month checkup on Thursday, May 1, the first day of National Lyme Disease Awareness Month.

Dr. Jemsek was pleased that I have been tolerating the treatment so well, and warned me that the 6th month treatment would be the most difficult of any of the months. He explained that we would be doing heavy biofilm busting the first week of the protocol and lots of clean-up the second week. The third week will include heavy hitting of Babesia. This will result in attacking the bacteria that have been in hiding and killing them.

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Don’t Look Back!

Month 5 Update

Karen SmilingAs of today, I am officially finished my month 5 regimen and on treatment break until May 1. I am happy to be finished such a difficult month, and am grateful to be feeling pretty well. As I read through my journal entries of these past few weeks, it is hard to believe it was really me who wrote them. I share them for those who are going through treatment thinking no one can relate to their suffering and that the suffering will never end. You really will get well. It just takes time and perseverance. I may be in my 5th month of IV treatment with my current doctor, but I have struggled for several years with other doctors prior to this, thinking this is how it would always be.

Running Tygacil

Running Tygacil at Betsy’s

Friday, April 4: I received my test dose of Tygacil last Tuesday and haven’t had any treatment since. So why do I still feel so awful from it? Woke up with such bad flu symptoms. Shivered all night long. No sleep. How is it I can be walking but really feel like I am dead? If I run the lactated ringers, which is supposed to be flushing out the dead toxins caused by the IV Tygacil, how can I still feel dead? If I get in the shower, it is good because it wakes me up but I still need to get back in bed, put on the heating blanket and lay there like a dead person. It all is confusing. Feel like the blood or fluid in my head is clogged and my brain is pounding, almost like something is squeezing it. Is this a headache? No, a headache doesn’t quite fit the feeling up there.

Saturday, April 5: I get woken up with a jolt with my heart racing and a nightmare night after night. I hate it but must tough it out. The itchiness drives me crazy. I’d like to scratch my skin off but I don’t. Feel so cold. Am under my down comforter but if I don’t turn the heating blanket on, I can’t warm up. My left eye lid is twitching constantly but Dr. Jemsek says it is only because the medicine is pulling bacteria out of the ocular nerve and it is being irritated. He says the nightmares and rapid heartbeat will go away as fewer bacteria are in there. He says it is coming from the bottom of the brain stem where the bacteria like to lie. It does not like to be stirred up. Ok. I will persevere. I have persevered for several years so what is a few more months?

Trying to stay still as the Tygacil runs through my body

Trying to stay still as the Tygacil runs through my body

Tuesday, April 8: Ran IV Tygacil last night. So nauseous. Dr. Jemsek says to take Zofran and two Marinol. Back of my head is spinning, spinning. What a freaky feeling. Medicine does not help. Still nauseous. Lay still in bed. So hard to try to lift my head up to take the oral medicines because the spinning intensifies. This Friday is the April Pennsylvania Lyme conference that I worked so hard at to make it possible for the attending nurses to get CEU credit. So disappointed I need to cancel and cannot give them their certificates. Hopefully I’ll be well enough to do it next year. Legs are aching, throbbing, and no appetite; need to force the food that Betsy gives to me. Ask her if I can have a smoothie instead. Maybe I will have more luck with that. Sheila brings me homemade soup. Tiny sips to keep myself hydrated.

Saturday, April 12: Made it through the week of Tygacil. Try to get out of bed but my knees are so wobbly and heavy. Get back in bed. Maybe it is too soon to get up. The nausea overwhelms me.

Running Cipro at Betsy's

Running Cipro at Betsy’s

Sunday, April 13: First day for my next set of IV antibiotics, Cipro and Merrem. So so queasy. Mom has tickets to the Phillies game. Try to tell her I’m afraid to go in case I throw up right there. She’s disappointed. Leif picks me up, holds my arms because I am so weak to walk. We bring a trash bag in case. I look straight out and don’t turn my head as we drive. We put my seat down so I can rest. Leif carries my shoulders. I look straight ahead, sit in my seat and don’t move. Can’t wait till it’s over. Oh how awful to have such good seats and want it to be over. Make it home without incident. Thank you, Jesus. Time to run evening dose. Fall asleep, wake up to my IV finished. Thank God I woke up.

Monday, April 14: Wake up again in the middle of the night with a jolt and heart palpitations. Wake up to the song, “Oh the Wonderful Cross.” “Love so amazing, so divine, demands my life, my soul, my all.” Very good reminder that no matter how bad this feels, God is on the throne, and He is good.

Thursday, April 17: Holy Thursday. Read Luke 21-22. I wonder what Jesus was thinking when he sat on that hill at night after he taught all day in the temple knowing that was the spot that Isaac was sacrificed and where he would be sacrificed the next day? Last day of treatment. Thank you, Jesus. Maybe the symptoms will subside. Gillian brings over potato soup for me to freeze. I now have homemade soup from Sheila, Anne Bradley and Gillian. Now I can take small sips of them. So grateful to have them. Still so nauseous so can only tolerate tiny amounts. Weak, body is so weak. Shower is a huge accomplishment. Back in bed to rest. Hard to breath. What is that about?

Friday, April 18: Last dose of Cipro and Merrem last night. Difficulty with sleep. The racing heart and nightmares go out of control. Chills, Cold sweats throughout the night. Didn’t realize my heating blanket was not on. That was why I was so cold. Feeling of the flu upon awakening. Run the lactated ringers to see if it helps. No relief. Keep my heating blanket on all day. This is the day the Lord suffers. How did he manage it? Was the fact that He knew the future any comfort for Him? The fact that He was humiliated, rejected, beaten is beyond understanding. It is beyond understanding that it was God Himself who took this on. Not a robber or a thief but rather God Himself. The perfect Lamb walked on this dirty cruddy earth and subjected Himself to the basest of deaths. Ok, I can get through this day if He could get through the Cross.

Easter Sunday, April 20: unbearable headache the last two days. God help me to enjoy Easter, the day you made our faith truth. God gives me some relief and I enjoy my time with my family. One of the greatest Easters. It’s so exciting to see the kids getting older, each with unique personalities. We celebrate Jack’s 7th birthday.

Monday, April 21: No IVs this week but must take the antimalarial Coartem the next three days. Excruciating headache is back. Lie still all day. Ok, didn’t know it was possible to have a headache this bad.

Tuesday, April 22: Headache is still there in the morning. Drink several bottles of the flavored water that Leif drops off. It leaves . With the exception of the wobbly knees, I’m feeling pretty good. Run two bags of lactated ringers to keep getting those dead toxins out. It works. Get to see Christopher and Colin. So proud as if they are my own. Can they be anymore perfect in my eyes? No, it is not possible for any of my nieces and nephews to be anymore perfect in my eyes. Nurse comes to see dad. Although he is failing, he is still holding on.

Wednesday, April 23: Last day of Coartem and last day of treatment until I go back to the doctor’s on May 1. Feeling pretty good. Feel happy, no nausea. No headache. Life is good. God is good. I made it through and I feel good! Allister Begg’s devotional today says: “Jesus wears the appearance of a slain Lamb as His royal dress in which He wooed our souls and redeemed them by His complete atonement. And these are not only the ornaments of Christ: they are the trophies of His love and of His victory for us. He has redeemed for Himself a great multitude that no one can count, and these scars are the memorials of that fight.” Thank you Jesus for fighting for me on that Cross and thank you for helping me to fight through these treatments. How would I survive in those dark moments without knowing this, without knowing the hope that you give?

On to month 6 soon. Seems impossible but it is true. Dr. Jemsek says month 6 will be harder but I will do it. I will because my God will fight the fight for me!

“The LORD your God will fight for you; you need only to be still.” Exodus 14:14

Month Five…Can it Be?

Receiving my Month 5 Protocol

 
Betsy and I drove down to Washington, DC, on Tuesday, April 1, to see Dr. Jemsek for my 5 month appointment. He told us that he was happy with my improvement thus far, and that I would now be entering the hardest two months of my protocol.

Dr. Jemsek writing out my plan

Dr. Jemsek writing out my plan

“Thus far, we’ve cleared out the periphery but now we have the biofilm to blast, which is the deepest layer. The disease likes to infect the bottom of the brain, and we need to get it out of there with some heavy hitters. We will be using IV Merrem as well as a new one called IV Tygacil to reach those layers.”
The nurse mixing up Tygacil

The nurse mixing up my Tygacil test dose

Tygacil can make a patient nauseous so he said that I should keep ginger, Zofran or phenergen on hand.
 
After they ran the Tygacil in the office, I went straight back to the hotel and fell asleep for four hours. I woke up for some dinner and slept another 12 hours but I never got sick. This was my prayer, and I was grateful to God for His protection.
 
Month 5 will require treatment for 3 weeks in a row with a one week break at the end. The first week I will be dosing with the Merrem and Tygacil on Monday, Wednesday and Friday. I will also be taking an oral antibiotic, antimalarial and anti-fungal Monday through Friday. In addition, I will be mixing xylitol with water and taking 2 tsp a day for 8 days along with a pill called Lactoferrin. This makes a sugar alcohol mix that acts as a detergent scrubbing open the biofilm that the bacteria hide in.
 
On the second week, I will be running IV Merrem and Cipro twice a day Sunday through Thursday. Cipro makes me queasy, and I’ve never taken it 5 days in a row so I pray for the best. The next week I will take the anti-malarial Coartem, which gave me intense nightmares and made me feel depressed the last time I took it. But I’m thankful it will only be for 3 days.
 
brain-answersThis month’s protocol will be pulling the bacteria out of the brain in the most powerful way yet. Thus, the side effects could be harsh, both physically and mentally. As always, I will need to think with my head remembering that God is there with me even when my emotions try to tell me otherwise. I’ve been very blessed with a core support network and a good God so I know I will get through it yet again. There is a lot to be hopeful about!

Halfway Mark

A shot right after finishing treatment

A shot right after finishing treatment


As of last night, I finished my last IV antibiotic for the month of March. This means I am at the halfway mark for the IV antibiotic phase of my treatment…4 months down and 4 more to go! Thank you, Jesus!!

Although I still have to take an anti-malarial for the next four days, I will actually be off IV antibiotics until April 1 when I will go back down and get tested for my next round. Please pray for safe travels down and that I will tolerate the test dose.

The Month 5 antibiotic can cause some pretty potent side effects. So please pray that once I begin Month 5 treatment on April 7, I will be focused on the end result and not live in the day-to-day effects that it might give me. I need God’s strength to get through the hardest phase of my treatment protocol.

Thank you,
Karen

Holding on to hope!!
 
 
“Those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.” Isaiah 40:31

Third and Fourth Month Visits to Dr. Jemsek’s

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I’m sure by this time, if you live in the Northeast, you’re wishing you’d never see snow again. For me, it seems every time I have an appointment with Dr. Jemsek, we have snow. I had just finished my third month of treatment and was scheduled to go to DC for an appointment on Thursday, February 13, to be test dosed with the new antibiotic and to find out about my 4th month protocol. Just like last month, they were predicting a snow storm on the day of my appointment. Unlike last month, this time I believed them, and left the day before it was going to hit.

In doing this, not only did I make it ahead of the storm, but I also got to meet a sweet gal who is treating with Dr. Jemsek and who happened to have an appointment with him later that afternoon. We spoke for a few minutes while she was waiting to be seen by Dr. Jemsek. It was so nice to meet after all our FB conversations. She is a tremendous help to me and a blessing in my life.

After this, I headed back to the hotel for some rest and to wait. Would it snow and how much would we get? Well, snow it did. Although DC called a state emergency that day and most places were closed, Dr. Jemsek’s office was open! In situations like this, a core staff stays nearby given the complexity of the patients and the distances they come from.
All went well at the appointment. I was tested on my new antibiotic, Cipro, and had no reaction.

In addition, they explained some of the changes/additions for this month. I would be staying on the antibioitic Septra and the anti-malarials Mepron and Artemisinin, but I would be adding another anti-malarial medication, Coartem, to continue to attack Babesia. I would also be adding some biofilm busters to the mix as well–Lactoferrin and Xylitol. Biofilm busters are necessary because these bacteria hide in clusters, and if these clusters are not busted open, the bacteria will only come out later. This month, on Monday, Wednesday and Friday, I will run IV Cipro in the morning and IV Zithromax in the evening two weeks on, one week off, two weeks off for a 7 week cycle this time, going back to Dr. Jemsek’s on April 1.

The addition of IV Cipro is to start hitting the coinfection Bartonella hard, and the Zithromax will be continued because Babesia must be treated for at least 100 days at my stage, with multiple agents in order to get rid of it. It will be a rougher protocol than last month since we will now be attacking the various bacteria and protozoans directly. I will try to live in the moment though, recognizing the end goal.

Image

I went back to the hotel room straight after my appointment because, by this point, I was starting to feel its effects. I went to lie my head down and noticed I was feeling short of breath. This sensation of complete exhaustion but extreme shortness of breath lasted about 4 hours. It was alarming given that I was in a hotel room alone. I did call the afterhours service to ask them their advice and they told me to go to the emergency room if it got worse. Given that I’ve had most of these symptoms at one point or another, I have learned to try to ride them out. Thankfully, it went away on its own.

I left DC the next morning, Friday, February 14, to make my way back to Betsy’s. I then started my current round of treatment that Monday, February 17. This regimen seems to knock me out more than the previous treatments so I find I am sleeping more during the day as well as at night.

Honestly, I do not know what I would do if I had to work a 9 to 5 job right now. In fact, sometimes it seems like a lifetime ago that I had the energy to work the kind of hours that I did. I still hold out hope that I will be working to that extreme again … working full steam ahead in a way that makes a difference in this world. When I say working full-time, I may mean volunteering full-time. That’s not the part that is important. What is important is that there is so much heartache, so much suffering and so many who have so little that I want to be used by God to make a dent in these injustices. Whatever it is that I will do, it will be something I am impassioned about. Life is too short not to make it count. For now, I try to be faithful to the path He’s given me. It’s not one I would have predicted but one that does give me peace, joy and purpose.

Duncan and Marcy...Two of my favorite people!!! :)

Duncan and Marcy…Two of my favorite people!!! 🙂

One of the unexpected surprises of my time at Betsy’s is a boy named Duncan who just brightens up the house. He and Marcy (the dog) are always happy to see me when I arrive back from spending a few days with my mom. Duncan does his 7th grade homework in my room on the study chair and Marcy plops on the bed with me for her endless hugs. We have lots of talks while Duncan does his homework, and I get to learn a lot about how the mind of a 7th grader works!

On another note, my dad is on hospice at my mom’s, and I feel gratitude that he is well taken care of and not in pain. I talk to my mom daily and her positive attitude inspires me. I am fortunate to have a mom who sees the best in all situations. God has been so good to have kept my dad around for so long, and He is so good to have given my dad a wife who takes her vows so seriously. I feel she misses out on so much since she cannot be out the way your average retiree would be, but she does not complain. She is quite a role model to me.

Holding on to hope!!
“May the God of hope fill you with all joy and peace as you trust in Him, so that you may overflow with hope by the power of His Holy Spirit.” Romans 15:13

Month Three Visit

January, 10, 2014

This is the dreaded Mepron, which is taken to fight Babesia. It is a neon yellow color and has the consistency of paint. It is not easy to swallow and makes my body sweat as the time arrives to take it.

This is the dreaded Mepron, which is taken to fight Babesia. It is a neon yellow color and has the consistency of paint. It is not easy to swallow and makes my body sweat as the time arrives to take it.

During my second month visit to Dr. Jemsek’s, we had a snowstorm but Betsy and I were able to survive the elements and drive. This time, they predicted snow again but I assumed we would still be able to drive. Well, it hit so hard that all the roads were icy and the schools were closed. It was difficult for Betsy to go with me since her son is school age and was off for the day. I was concerned about missing my appointment and being off schedule. So … Betsy dropped me off at the train and, in spite of all the chaos of the trains being canceled and delayed, I made it to the appointment. I was 45 minutes late but I made it!

At this appointment, Dr Jemsek told me I would stay on IV Clindamycin but would be adding IV Zithromax. The IV Clindamycin would continue to target the spirochete form of Lyme, and the IV Zithromax would be added to start attacking Babesia head on. In addition, I would be taking the anti-malarial Mepron as well as the herbal Artemisinin to add to the battle against Babesia. Working these together helps prevent this protozoan from building up a resistance. I would be on a Monday, Wednesday, Friday schedule two weeks on, one week off, two weeks on, one week off. Because it is such a complicated science, this should only be done by a well-trained LLMD.

The protocol has been going well after a minor adjustment of adding some anti-nausea medications but unfortunately just the sight of Mepron, a bring yellow liquid with the consistency of paint, make my body sweat and go queazy. Dr. Jemsek says it has to be taken for 100 days to ensure we’ve gotten rid of Babesia, and this will be a day I will celebrate.

Holding on to hope!!

“The Lord is my strength and my shield; my heart trusts in Him, and I am helped. My heart leaps for joy and I will give thanks to Him in song.” Psalm 28:7

Month Two: Return to Dr. Jemsek’s for Next IV Test Dose

Return to Dr. Jemsek’s for Month Two Protocol

November 27, 2013

Here I am pictured with my angel Dr. Jemsek

Here I am pictured with my angel Dr. Jemsek

Happy Thanksgiving everyone!!

Betsy and I returned to Dr. Jemsek’s on November 27th, the day before Thanksgiving, to have my next IV antibiotic test run and to learn what this month’s treatment regimen would be.

Dr. Jemsek explained that my last IV antibiotic, Merrem, is a broad antibiotic that targets the extra-cellular spaces allowing it to kill the corkscrew form of Lyme. He said that I will staying on Merrem but he will be adding a new one.

This month I will be getting IV Clindamycin, which gets inside the cell walls. He said it will help limit the spirochete form of Lyme, and that it sets the foundation for killing the coinfection Babesia. Both the Merrem and the Clindamycin will be dosed twice a day on Monday, Wednesday and Friday at 8 a.m. and 8 p.m. They will each run for about an hour meaning I will be on the IVs for 4 hours a day. On the off days, I will be running a bag of Lactated Ringers to help flush out the dead Lyme bugs that the IV antibiotics will kill.

I will also be taking oral Septra DS, which is used for killing Bartonella but is also used as a base for the anti-malarials I will be taking this month to target Babesia. In addition, I will take the supplement Artemisinin and the prescription drug Mepron, which are anti-malarials that fight Babesia. They will also be dosed on Monday, Wednesday and Friday.

This is a heavy protocol in terms of time and in terms of the amount of medications I will be on. But I am fortunate to be living with a nurse who will be able to observe me and assess me throughout this month’s treatment.

I do not start this new treatment protocol until Monday, December 2, so I am grateful to be able to celebrate Thanksgiving with my family before the heavy hitters begin. May you have a very happy Thanksgiving celebrating the many blessings in your life and thanking the Lord who is the giver of all good things. “Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows.” James 1:17

Do pray for me that I tolerate this new round of treatment well and that it kills the things that are needed so I can get well!