Living with Neuropathy - Welcome to the group

Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?

@avmcbellar

Hi @fumi I would also like to welcome you. I agree with John. I have neuropathy and balance issues. Exercise is a benefit for me. It improves circulation and can help with nerve regeneration. It is a slow process but I think exercise can be helpful for neuropathy. Ask your provider if exercise is OK for you.

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Thanks, although having moved a couple of thousand miles just before the COVID door slammed, I do not have "providers."

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@jesfactsmon

@bustrbrwn22
Jen, I hear you. You are suffering like pretty much everyone here is, it's crazy. This neuropathy discussion is like visiting a different planet in some far away star system where people live a completely different existence than what most earthlings can relate to. Most people have NO IDEA of this way of living. Linda just felt a little bit of energy this morning and decided she was going to go out with me to Best Buy and maybe Target. And we did! We went to Best Buy and Linda was almost like her old self. Then we stopped at Target, a mistake in retrospect. By then she had done too much but didn't really realize it or at least did not want to stop being normal. Then we came home. Her legs almost didn't work from the car into the condo. I'd never seen her be so immobile before when we were out, I practically had to carry her. Such is life for the outer space people. This is living in a very different sense, and where very small achievements become astounding accomplishments. I'm still amazed we went out, she and I. It's VERY unusual for us this past almost 2 years.

Jen, just know it's a weird and sometimes awful life you and Linda are now faced with. But don't give up. Do not ever give up. Look at each day as an accomplishment that you got through and give yourself a major gold star. You are incredible and you and Linda and Renee and Lori and Chris and all of you other great people here, are my heroes! Best, Hank

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@jesfactsmon Hank, I am so happy for you and Linda! How wonderful it must have been for her, and you too!

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@bustrbrwn22

@faithwalker007 I overdid some menial tasks this am so now am ramping up to a 9 in pain. Stupid my own fault. So sifting through emails and was looking at job postings and denigrating myself for jobs I’ll never be able to have again but that I used to be able to. It’s like mourning a death that never stops. Going down a downward spiral and I happened upon your response. I am shedding tears and some pain along with it. Thank you for reading and responding. Your family and friends are lucky indeed.

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Every once in a while I revisit my old life. I think of what and where I’d be if I’d never met this thing called CRPS. Would I still be a pharmacy manager? Would we still be in Wyoming? Would I be the caregiver of my husband as I’d always been or would we finally have made it to the Mayo or Johns Hopkins to figure out what was happening to him? Or would we still be exactly where we are today?
I don’t spend much time in the past or the future because I usually begin to slip into a deep melancholy. And in that moment, I’m pulled right back into the present by what I call my Life Verse, Luke 12:34.
This verse has been my Life Verse since my 18th Christmas, the Christmas after I became a Christian.
The passage of Luke 12:22-34 has been our marriage’s mantra, so to speak, for the last 31 years (I married two days before my 20th birthday.)
No matter what happens at any time in this life, or pain we must suffer, God is with us and will provide for us— no matter the need.
The future is the future and He tells me rather specifically not to dwell on it. It’s taken me awhile and I still slip up, but I’ve learned, and now I know why. I do what I’m told! Lol
I’ve also discovered that evidently He doesn’t believe curing my pain is a “need right now. That’s not saying that “I” don’t but it’s still here and I’ve asked for that a lot!
As many of y’all know, I’m one of the few in the world with a rare disease, rare allergies, multiple interactions with disease states and drugs which limit treatment, and live in a very rural area with little access to specialty healthcare. Leave it to me!
But I do know God is providing for every need I have otherwise. What, you may ask?
1. An XL fur-lined, double-belted, leather mobility support harness w/ 6 ft handle for my service dog Bo. Cost w/shipping: $113 (usual pricing avgs $155-$550)
2. A van to travel around town and out-of-town comfortably and eliminate the need of having to “climb” in and out of our other vehicles (Jeep Wrangler and Work Pickup). $4400 cash (Minivans average: used $3500-$20,000)

Other needs have been provided surprisingly and by planning with our budget. Both ways, He fulfills those needs. Many needs that we know about and can plan for (like that $7000 neurology bill) and others we have no idea about until they slap us in the face (like that $2000 radiology bill) and are scrambling to figure out how we can tackle!

Do I want the pain to go away? Of course, but I trust God to take it away when we can no longer bear it together.

I hope this makes sense because I didn’t mean write so much! Lol

Either way, know this, you’re not in this fight alone and whatever you need, He will provide. All you have to do is ask.

And that’s ditto for me too. 🐹👩🏻

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@jesfactsmon

@bustrbrwn22
Jen, I hear you. You are suffering like pretty much everyone here is, it's crazy. This neuropathy discussion is like visiting a different planet in some far away star system where people live a completely different existence than what most earthlings can relate to. Most people have NO IDEA of this way of living. Linda just felt a little bit of energy this morning and decided she was going to go out with me to Best Buy and maybe Target. And we did! We went to Best Buy and Linda was almost like her old self. Then we stopped at Target, a mistake in retrospect. By then she had done too much but didn't really realize it or at least did not want to stop being normal. Then we came home. Her legs almost didn't work from the car into the condo. I'd never seen her be so immobile before when we were out, I practically had to carry her. Such is life for the outer space people. This is living in a very different sense, and where very small achievements become astounding accomplishments. I'm still amazed we went out, she and I. It's VERY unusual for us this past almost 2 years.

Jen, just know it's a weird and sometimes awful life you and Linda are now faced with. But don't give up. Do not ever give up. Look at each day as an accomplishment that you got through and give yourself a major gold star. You are incredible and you and Linda and Renee and Lori and Chris and all of you other great people here, are my heroes! Best, Hank

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Wow Hank, I can so relate! First of all I want to say yay that Linda was able to go with you! You both must have felt so good just to get out of the house on an errand or two!

Yesterday my grandson took me to Hobby Lobby. I was elated to be out of the house! But my legs wouldn't cooperate with me and I could barely walk.

I had been so excited to look around the store but we had to leave early. The pain and weakness was unbearable!

I was bummed out (gross understatement!) but giving thanks for the beautiful day and time although short, spent with my sweet grandson.

I just wanted to say that I get it. Please let Linda know.

Thinking of you two and wishing you warm wishes. I wish I could make it better for you two!

Blessings, Sunnyflower. 🙏😊

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I now use a transport chair when I need to go to a store, get groceries, go for an appointment — a transport chair is smaller then a wheel chair, not so heavy — you can either push along with your feet, or have someone push you — it folds for putting into a vehicle — check on amazon or any place that sells medical supplies — be sure to get one with the larger (12") wheels in the back– this has been a life saver for me, both physically, mentally (and emotionally being able to get out) — please swallow your pride and look into this option

Liked by Leonard, Hank

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@faithwalker007

Every once in a while I revisit my old life. I think of what and where I’d be if I’d never met this thing called CRPS. Would I still be a pharmacy manager? Would we still be in Wyoming? Would I be the caregiver of my husband as I’d always been or would we finally have made it to the Mayo or Johns Hopkins to figure out what was happening to him? Or would we still be exactly where we are today?
I don’t spend much time in the past or the future because I usually begin to slip into a deep melancholy. And in that moment, I’m pulled right back into the present by what I call my Life Verse, Luke 12:34.
This verse has been my Life Verse since my 18th Christmas, the Christmas after I became a Christian.
The passage of Luke 12:22-34 has been our marriage’s mantra, so to speak, for the last 31 years (I married two days before my 20th birthday.)
No matter what happens at any time in this life, or pain we must suffer, God is with us and will provide for us— no matter the need.
The future is the future and He tells me rather specifically not to dwell on it. It’s taken me awhile and I still slip up, but I’ve learned, and now I know why. I do what I’m told! Lol
I’ve also discovered that evidently He doesn’t believe curing my pain is a “need right now. That’s not saying that “I” don’t but it’s still here and I’ve asked for that a lot!
As many of y’all know, I’m one of the few in the world with a rare disease, rare allergies, multiple interactions with disease states and drugs which limit treatment, and live in a very rural area with little access to specialty healthcare. Leave it to me!
But I do know God is providing for every need I have otherwise. What, you may ask?
1. An XL fur-lined, double-belted, leather mobility support harness w/ 6 ft handle for my service dog Bo. Cost w/shipping: $113 (usual pricing avgs $155-$550)
2. A van to travel around town and out-of-town comfortably and eliminate the need of having to “climb” in and out of our other vehicles (Jeep Wrangler and Work Pickup). $4400 cash (Minivans average: used $3500-$20,000)

Other needs have been provided surprisingly and by planning with our budget. Both ways, He fulfills those needs. Many needs that we know about and can plan for (like that $7000 neurology bill) and others we have no idea about until they slap us in the face (like that $2000 radiology bill) and are scrambling to figure out how we can tackle!

Do I want the pain to go away? Of course, but I trust God to take it away when we can no longer bear it together.

I hope this makes sense because I didn’t mean write so much! Lol

Either way, know this, you’re not in this fight alone and whatever you need, He will provide. All you have to do is ask.

And that’s ditto for me too. 🐹👩🏻

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As many of y’all know, I’m one of the few in the world with a rare disease, rare allergies, multiple interactions with disease states and drugs which limit treatment,
I can relate to your statement! I have multiple drug and food allergies, all sorts of neurological problems, and pain. I use a power chair in the house as my feet are so messed up due to prior bad surgeries plus small fiber neuropathy and CRPS. I am recently widowed and have found the alone time to be very precious in growing spiritually. I admitted I was feeling unloved to God and asked Him to fill my heart with His love. It was so spectacular! Every day I get filled. I am learning to live heaven to earth and not earth to heaven and it is improving my life. May God's blessings continue to abound in your life. Thanks for sharing.

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@barbbie

As many of y’all know, I’m one of the few in the world with a rare disease, rare allergies, multiple interactions with disease states and drugs which limit treatment,
I can relate to your statement! I have multiple drug and food allergies, all sorts of neurological problems, and pain. I use a power chair in the house as my feet are so messed up due to prior bad surgeries plus small fiber neuropathy and CRPS. I am recently widowed and have found the alone time to be very precious in growing spiritually. I admitted I was feeling unloved to God and asked Him to fill my heart with His love. It was so spectacular! Every day I get filled. I am learning to live heaven to earth and not earth to heaven and it is improving my life. May God's blessings continue to abound in your life. Thanks for sharing.

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You are tackling the biggest challenge known to man and I’m excited you are aware of it. We are to be in the the world and not of it.
As Chronic Pain warriors, CRPS soldiers especially, I believe we have an advantage on our brothers and sisters! Lol

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@faithwalker007

Every once in a while I revisit my old life. I think of what and where I’d be if I’d never met this thing called CRPS. Would I still be a pharmacy manager? Would we still be in Wyoming? Would I be the caregiver of my husband as I’d always been or would we finally have made it to the Mayo or Johns Hopkins to figure out what was happening to him? Or would we still be exactly where we are today?
I don’t spend much time in the past or the future because I usually begin to slip into a deep melancholy. And in that moment, I’m pulled right back into the present by what I call my Life Verse, Luke 12:34.
This verse has been my Life Verse since my 18th Christmas, the Christmas after I became a Christian.
The passage of Luke 12:22-34 has been our marriage’s mantra, so to speak, for the last 31 years (I married two days before my 20th birthday.)
No matter what happens at any time in this life, or pain we must suffer, God is with us and will provide for us— no matter the need.
The future is the future and He tells me rather specifically not to dwell on it. It’s taken me awhile and I still slip up, but I’ve learned, and now I know why. I do what I’m told! Lol
I’ve also discovered that evidently He doesn’t believe curing my pain is a “need right now. That’s not saying that “I” don’t but it’s still here and I’ve asked for that a lot!
As many of y’all know, I’m one of the few in the world with a rare disease, rare allergies, multiple interactions with disease states and drugs which limit treatment, and live in a very rural area with little access to specialty healthcare. Leave it to me!
But I do know God is providing for every need I have otherwise. What, you may ask?
1. An XL fur-lined, double-belted, leather mobility support harness w/ 6 ft handle for my service dog Bo. Cost w/shipping: $113 (usual pricing avgs $155-$550)
2. A van to travel around town and out-of-town comfortably and eliminate the need of having to “climb” in and out of our other vehicles (Jeep Wrangler and Work Pickup). $4400 cash (Minivans average: used $3500-$20,000)

Other needs have been provided surprisingly and by planning with our budget. Both ways, He fulfills those needs. Many needs that we know about and can plan for (like that $7000 neurology bill) and others we have no idea about until they slap us in the face (like that $2000 radiology bill) and are scrambling to figure out how we can tackle!

Do I want the pain to go away? Of course, but I trust God to take it away when we can no longer bear it together.

I hope this makes sense because I didn’t mean write so much! Lol

Either way, know this, you’re not in this fight alone and whatever you need, He will provide. All you have to do is ask.

And that’s ditto for me too. 🐹👩🏻

Jump to this post

@faithwalker007
Renee this is beautiful. I also do know that as long as you remain turned toward him he will always provide for you everything that you need when you need it. It's an incredible thing to see it actually happen. All my best, Hank

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The one thing that I have found helpful to me regarding decreasing my neuropathy symptoms is diet. Unfortunately there is no magic pill to provide instantaneous gratification here. I am not willing to endure the risks of taking medications. I do not need any more health issues. Just like with everything we decide to do in life, taking medications involves taking risks.

Over a year ago I had decided to try the Keto diet for its positive effects on neurological disorders for which it was originally designed. It was intended to lower the occurrence of seizures in early 1900s before drugs were invented. It was a difficult diet(low carb) to follow because one, I do not follow a meat diet other than the occasional fish and two, I do not enjoy eating fatty foods. I did feel my neuropathy symptoms decreased during the 6 months on the Keto diet. Even a friend told me although he had lost 25 lbs while on the diet, he did notice after stopping, his hand tremors came back.

Rather than going back to that diet I had learned to alter the Keto diet recipes in order to keep the carbohydrate and fat content low. I average about 60 grams of carbs daily. My husband and I enjoy eating pizza and bread once again. He had managed to lose 25 lbs and maintain his weight loss through a low carb diet. Carbohydrates are so addicting. The more you eat the more you want. We don’t realize carbohydrates or sugars are the cause of inflammation in our bodies. Over the Thanksgiving holiday I thought a few more carbs than usual won’t hurt. Well, it did. I noticed that my neuropathy symptoms got significantly worse. I am happier now going back to my normal pattern of eating. Initially it takes a couple of weeks for the body to adjust to the lower intake of carbohydrates but for me the wait was worth it.

I have found taking few supplements is best for me. I make sure to eat a low carb well balanced meal. I do not take a multivitamin anymore because of the bitter taste it had left nor the ALA for the burning in my stomach and esophagus. Both are now completely gone. Glad I don’t have GERD or heartburn. I have discovered many people experience the GI side effects of the ALA. Trying to subside my neuropathy symptoms with supplements caused me to have other symptoms. I am glad they were not permanent. Although the ALA made the neuropathy somewhat better, I know the “heart burn” made me feel miserable all day. The only way to know is by attempting an experience through trial and error and not relying on a “magic pill”. Hope my discoveries help. Toni

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@fumi

Thanks, although having moved a couple of thousand miles just before the COVID door slammed, I do not have "providers."

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Hi @fumi you need to establish at least one pcp in your new neighborhood. Should you have any health issues you wouldn’t be able to see a physician right away. You may have to go the hospital ER for a quicker health resolution and that may be more costly for you. The initial appointment takes a longer wait to establish yourself as a new patient. It is important for the physician to get to know you and your medical history before he or she can provide care. When you received the diagnosis of neuropathy did your physician then approve exercise for you? The determination all depends on your medical history. A physician will be able to advise exercise for you.

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I have established a couple of local medical relationships, not based, however, on neuropathy. After something like 15 visits to various tentacles of the medical system where I first took my numb limb problem (and tests galore, including bone marrow extraction), the final word I got (besides "Idiopathic") was "Whatever you have, it is not my specialty." Advice? Zero. The PCP I had in Pennsylvania was equally flummoxed and blank on advice.

Liked by Leonard, sunnyflower

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@fumi

I have established a couple of local medical relationships, not based, however, on neuropathy. After something like 15 visits to various tentacles of the medical system where I first took my numb limb problem (and tests galore, including bone marrow extraction), the final word I got (besides "Idiopathic") was "Whatever you have, it is not my specialty." Advice? Zero. The PCP I had in Pennsylvania was equally flummoxed and blank on advice.

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@fumi any physician will be qualified to let you know whether exercise is approved for you. I was told by my neuro surgeon that I could exercise and no longer needed approval for medications or supplements after my AVM which lead to neuropathy. I know physicians don’t have all the answers for our medical ailments. I too got “I don’t know” but I use my physicians to answer questions so I can form my own decisions to base my trial and error experiences. That is how I know exercise is a benefit for me. As long as you are fit to exercise you may try a low impact activity that is not demanding before attempting any strenuous exercise. Check with your physician first to see if your health can tolerate exercise.

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@avmcbellar

The one thing that I have found helpful to me regarding decreasing my neuropathy symptoms is diet. Unfortunately there is no magic pill to provide instantaneous gratification here. I am not willing to endure the risks of taking medications. I do not need any more health issues. Just like with everything we decide to do in life, taking medications involves taking risks.

Over a year ago I had decided to try the Keto diet for its positive effects on neurological disorders for which it was originally designed. It was intended to lower the occurrence of seizures in early 1900s before drugs were invented. It was a difficult diet(low carb) to follow because one, I do not follow a meat diet other than the occasional fish and two, I do not enjoy eating fatty foods. I did feel my neuropathy symptoms decreased during the 6 months on the Keto diet. Even a friend told me although he had lost 25 lbs while on the diet, he did notice after stopping, his hand tremors came back.

Rather than going back to that diet I had learned to alter the Keto diet recipes in order to keep the carbohydrate and fat content low. I average about 60 grams of carbs daily. My husband and I enjoy eating pizza and bread once again. He had managed to lose 25 lbs and maintain his weight loss through a low carb diet. Carbohydrates are so addicting. The more you eat the more you want. We don’t realize carbohydrates or sugars are the cause of inflammation in our bodies. Over the Thanksgiving holiday I thought a few more carbs than usual won’t hurt. Well, it did. I noticed that my neuropathy symptoms got significantly worse. I am happier now going back to my normal pattern of eating. Initially it takes a couple of weeks for the body to adjust to the lower intake of carbohydrates but for me the wait was worth it.

I have found taking few supplements is best for me. I make sure to eat a low carb well balanced meal. I do not take a multivitamin anymore because of the bitter taste it had left nor the ALA for the burning in my stomach and esophagus. Both are now completely gone. Glad I don’t have GERD or heartburn. I have discovered many people experience the GI side effects of the ALA. Trying to subside my neuropathy symptoms with supplements caused me to have other symptoms. I am glad they were not permanent. Although the ALA made the neuropathy somewhat better, I know the “heart burn” made me feel miserable all day. The only way to know is by attempting an experience through trial and error and not relying on a “magic pill”. Hope my discoveries help. Toni

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I would like to include another positive outcome of the Keto diet. Without thinking about it, two months into the diet my taste to foods improved. Prior I had an over sensitivity to the sweet taste in foods. It was so overwhelming I did not enjoy eating. Simple things like vegetables left an awful sweet taste in my mouth. My neurological team of doctors were baffled which I could not understand why when I had later figured it out. A low carbohydrate diet helps to improve the bodily symptoms when the nerves are impaired. Without the nerves, the sensory system of the body does not work as well hence the balance issues or sensitivity to temperature and pain. I continue to have my taste back to where there is no over sensitivity to the sweet taste. I can understand the Keto diet may be sacrificing for some. For me I would rather give a diet a try than be hopeful for a magical fix that may never come or may come many years down the road. At least I get some relief in the meantime. Toni

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@avmcbellar

The one thing that I have found helpful to me regarding decreasing my neuropathy symptoms is diet. Unfortunately there is no magic pill to provide instantaneous gratification here. I am not willing to endure the risks of taking medications. I do not need any more health issues. Just like with everything we decide to do in life, taking medications involves taking risks.

Over a year ago I had decided to try the Keto diet for its positive effects on neurological disorders for which it was originally designed. It was intended to lower the occurrence of seizures in early 1900s before drugs were invented. It was a difficult diet(low carb) to follow because one, I do not follow a meat diet other than the occasional fish and two, I do not enjoy eating fatty foods. I did feel my neuropathy symptoms decreased during the 6 months on the Keto diet. Even a friend told me although he had lost 25 lbs while on the diet, he did notice after stopping, his hand tremors came back.

Rather than going back to that diet I had learned to alter the Keto diet recipes in order to keep the carbohydrate and fat content low. I average about 60 grams of carbs daily. My husband and I enjoy eating pizza and bread once again. He had managed to lose 25 lbs and maintain his weight loss through a low carb diet. Carbohydrates are so addicting. The more you eat the more you want. We don’t realize carbohydrates or sugars are the cause of inflammation in our bodies. Over the Thanksgiving holiday I thought a few more carbs than usual won’t hurt. Well, it did. I noticed that my neuropathy symptoms got significantly worse. I am happier now going back to my normal pattern of eating. Initially it takes a couple of weeks for the body to adjust to the lower intake of carbohydrates but for me the wait was worth it.

I have found taking few supplements is best for me. I make sure to eat a low carb well balanced meal. I do not take a multivitamin anymore because of the bitter taste it had left nor the ALA for the burning in my stomach and esophagus. Both are now completely gone. Glad I don’t have GERD or heartburn. I have discovered many people experience the GI side effects of the ALA. Trying to subside my neuropathy symptoms with supplements caused me to have other symptoms. I am glad they were not permanent. Although the ALA made the neuropathy somewhat better, I know the “heart burn” made me feel miserable all day. The only way to know is by attempting an experience through trial and error and not relying on a “magic pill”. Hope my discoveries help. Toni

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Hi Toni, glad you've found a way to help yourself, especially your painful neuropathy Sxs! Thx for sharing.

My persuasion regarding food is that we need to eat a good balanced diet. This was learned the hard way and not until after I harmed my body.

I saw a guy on Dr. Oz who went around the world researching who were the most heart-healthy and fit. I forget the name of the country but believe it is a South American country. Three take aways. 1. They move 90% of the time they are awake. 2. They sleep 9 hours per night. Now sit down! 3. They eat a VERY high carb diet; plantains at every meal whether steamed, fried, boiled, etc.. I'm thinking they also have a lot of fiber. Funny how this came out sometime around when the Keto diet did.

I lost 200# on a very low calorie diet which is the worst thing ever for osteoporosis which I already had severe from daily steroids (3 pelvic and 1 rib Fxs). Unintentionally, and without realizing it, I had no dairy or bread for years except for the occasional binge. No dairy is another "worst thing" for osteoporosis. Guys, I only learned this recently from the bones, muscles and joints Connect blog!! My most recent bone density scan showed I'm significantly worse. It's extremely disconcerting to say the least!

But thanks to the GREAT, caring people here, I have learned the error of my ways and how to make changes to improve my health and /or at least prevent further problems.

Unintentionally, I lost this weight eating low calories. As it turns out, with the choices I made, it turned out that I was not having much fat. More carbs. Now my carbs are 2 or 3 apples every night and blueberries in my yogurt daily.

I wish all of you the best for yourselves and whatever works the best for you it. It's so individualized.

Warmest wishes, Sunnyflower. 😊🌹

"Oh magnify the Lord with me and let us exalt His name together" Psalm 34 :3 🙏

Liked by Leonard, avmcbellar, Hank

REPLY
@fumi

I have established a couple of local medical relationships, not based, however, on neuropathy. After something like 15 visits to various tentacles of the medical system where I first took my numb limb problem (and tests galore, including bone marrow extraction), the final word I got (besides "Idiopathic") was "Whatever you have, it is not my specialty." Advice? Zero. The PCP I had in Pennsylvania was equally flummoxed and blank on advice.

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Dear Fumi, wow, I 'm so sorry for all you' ve been through!! I hope and pray that you find just the right doctor for yourself that can really help you. I will be praying for you for that. Warmest wishes, Sunnyflower

Liked by Leonard

REPLY
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