Some of you may have noticed my blogging absence recently.
I wish I could tell you that I have been off traveling again…. but that would be a lie.
I wish I could tell you that I was just so busy living life and doing things…. but that would be a lie.
I have actually been trying to figure out if I should really blog on this topic right now- or leave it for another day but while I am going through it, I guess I should capture it a bit. As most of you know, I advocate quite a bit for mental health awareness. I like to capture my pain in the moment so I can help bring awareness, so I am going to do that now for a completely different health problem. One that is actually quite common, but definitely not talked about or even something a lot of people will want to admit to.
Curious?
Meh- You may not want to be.
I also just want to add that I am not telling my story for pity, sympathy and attention (Though some prayer would be appreciated if you are so inclined) so let’s just get that ridiculousness out of the way now.
Here we go:
I have spent the past week in tremendous pain. Pain so excruciating that I actually end up needing to stay in bed because it gets to the point that I cannot walk, sit or stand (laying down too) without being in complete agony. Some painkillers don’t even work, others just slightly mask it. Fevers take over my body, my ability to use that washroom for that relieving number two was gone and it wasn’t because I was suffering from constipation. I had pressure and swelling so bad in my rectal area, that it puts pressure on my tailbone and my nerves. On a scale of one to ten pain-wise? This is a twenty-sometimes a fifty. Last year I actually went into shock from the pain-which had the ER doctors loading me up on Dilauded while they figured out which surgical route to take. (If you aren’t familiar with that painkiller-look it up)
Thankfully this time around my problem was considered superficial enough that while I spent the night in hospital-I avoided the knife and all the drama that come with it. (though I had to yet again have another CTScan-I hate those things)
I had developed yet another rectal abscess.
(TMI? Try living it!)
That’s my eighth one in thirteen years. While the one I am currently recovering from is my weirdest case- it’s thankfully not my worst case.
The worst abscess was actually the one that started this mess to begin with. The one that was caused by something women do every single day. I gave birth naturally to a 9 pound baby and tore internally while pushing. Only, no one knew at the time that I tore. So in the months following delivering my 9 pound bundle of joy, I wasn’t in the best health (fevers, rashes, swelling that couldn’t be explained) It wasn’t until three months later, I was rushed to emergency after losing the ability to sit a surgeon realized what was happening and had to quickly take action with emergency surgery.
I was told that the infection had been so bad that I had come within about 24 hours of losing a good chunk of my bowels and I was the worst case the surgeon had ever seen.
That year alone I had more months under nurses care then I had without them. I had two surgeries that year, ten months apart. My mother had to take a considerable amount of time off work, not only look after me during my recovery but to look after my baby. My baby- who for months I could not look after. Who I could not pick up or hold unless someone brought her to me because I was confined to my bed or the couch in pain. I felt helpless and useless.
Every day for MONTHS nurses would have to come into my home, pull over two meters of packing out of my body (as the wound heals and shrinks-the packing amount shrinks) wash, measure, check for new tracts (at one point there were three tracts that stemmed from the main one), then repack the wound… over and over again.
EVERY.
SINGLE.
DAY.
This is NOT a pleasant process-it’s embarrassing, extremely painful, it wears you out mentally, physically and emotionally.
I always describe the pain of both the abscess and the packing/cleaning process as this:
Think of what a wire bottle brush feels like. Now imagine what that brush may feel like shoved up your ass constantly, sloooowly twisting, while someone pours hot acid into the wound. The pain in that area then shoots outward to all other points of your body-causing your entire body to stiffen, hurt and throb.
Sounds pleasant right?
I got through it that first time- but with the warning that I had developed what the surgeon referred to as a complex fistula. A horseshoe shaped tube now permanently inside my body, intertwined with my sphincter, that would cause my infections to reappear from time to time and there was nothing the surgeon could do because of the location of it. Of course I don’t develop the regular fistula. I had to go that extra mile and develop one of the worst ones.
Great.
So I went on with my life.
I tell this joke to my kids when they are upset I am ill. I always try to lighten the mood. Laughter IS the best medicine.
“If I were a dinosaur-what kind would I be?”
“A Mommy-Sore-Ass”
The infections have become a painful pattern in my life. There is no rhyme or reason to how or when they develop. I usually go years without one- suffer for about six weeks from the time the abscesses develop, to them knocking me out in the OR or ER to drain it, to when I am discharged from nurses care weeks later.
At this point I am a professional at these things.
Unfortunately, for reasons we can’t explain- I have now gone from suffering from the infections every few years to every six-seven months.
If you read my blog entry titled “I’m Still Broken” You will see I actually discuss my anxiety levels toward these infections and I was right… it did return. I am just lucky it didn’t happen while I was in a foreign country. I was lucky it didn’t ruin yet another trip.
I have now had three of these in the span of the year. It’s the reason my mental health has declined. It’s one of the reasons I am exhausted. These things are the reason I feel misunderstood and anxious. They are the reasons I am nervous about traveling. They are the reasons I no longer go out to work outside the home. There is quite literally an uncontrollable monster inside my body that haunts me.
The fear of these abscesses is slowly taking over my life.
Now I know some of you are wondering if there is something that can be done. Prevention? Surgery?
I am STILL researching and trying to learn the answers to that question. I have tried a healthier lifestyle, vitamins, immune boosting super-foods, physical activity. Been there, done that and I still try and will continue to use alternative paths. I have sought consults from both surgeons and specialists. I have had all but one surgeon tell me that my case is too complicated and risky to try to correct. I have that one general surgeon who is convinced that he can ‘cure’ it – but after having so many other surgeons tell me my case is ‘too dangerous’ (as in the problem could be made worse… and the surgery isn’t necessarily going to be a permanent fix- fistulas are known to be problematic) I do not want just any random surgeon cutting me open. It scares the living shit (pun intended) out of me to think that this problem could be made worse. Its easy for people to tell me “Well you wont know until you risk it-just let him try” since it’s not their pooper at stake. I haven’t completely ruled that surgeon out. I would just prefer consulting far and wide before making what could be a life/body altering decision.
The good news is next week I am off to see a colorectal surgeon who is going to look at my case. I know there has been some progress with people like me who suffer from the more complicated ‘horseshoe’ fistulas and I truly hope that this new surgeon may have some better news for me.
I also have an amazing support system. I used to be embarrassed about suffering from these but now I say ‘screw it’ and while I don’t post all the gory details- I do share when I am ill- which brings so many of my friends and family out in droves to pray for me, to laugh with me (if humor doesn’t bring you through-what will?) and to let me know I am NOT alone. Thank you to those who put up with my fantASStic medical drama.
My husband is a superstar. He had been away on his lengthy business trip and when he came for a visit this past weekend and discovered I was ill again- he refused to leave until I had been dealt with in the hospital and my parents were able to arrive to help. He worked tirelessly from home for his job, around the house, with the kids and dog and with me. The night I spent in hospital I actually ended up sending him home until morning because he was falling asleep in the chair from exhaustion. He is my hero and he needed to rest.
My mother is here helping me while I recover and now that the antibiotics are kicking in I feel much better. I don’t even need pain killers today and I hope to be back to ‘normal’ next week.
So that’s it. There are more stories I have. More details I could get into-but this entry is getting long.
Perhaps maybe I will save the rest for if ever I write a book about how much having a fistula sucks :
The PrinceAss Diaries?
Me, Myself and Irene’s God-damn pain in her ass?
Fifty Shades of Sterile Packing?
(I really need to work on better titles….)
Like always, I hope by sharing this story that I can raise awareness. That people can understand that these rectal abscesses and fistulas are actually quite common but typically embarrassing or taboo so you never hear about it often. Most people I know that suffer from these tend to message me privately about it. I have a secret community of friends who know what it is like. I am probably one of the only people I know who say “I don’t care-I am going to talk about it-this is part of my life and I want people to know what it is and that it isn’t fun. I want doctors to find a cure!”
It’s been thirteen years of my life. I’m done.
If you have a friend or relative that suffers from rectal abscesses and you think it is ‘funny’ or ‘not that bad’ because of the location of the body and they can still continue on with life or work- know that you’re an ass (again-pun intended) These things are quite literally the most painful thing I have ever experienced and I have given birth twice. I wouldn’t wish this on my worst enemies. (Terrorists and general EVIL people-yes…. regular people… Nope) So when they say ‘I’m in pain-I can’t sit.’-believe them.
If you are in the same boat- I would love to hear from you. Especially if you have undergone the corrective surgery to fix the fistula. You can contact me via my contact page if you aren’t comfortable leaving a comment.
If you have made it to the bottom of this lengthy post- I thank you for taking time for reading this through.
Luv you, your bravery, your sense of humour and most of all you ass 😘
Hugs my friend
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LOL… Well- despite all the drama it causes…It really is a nice ass! 😉 Thanks Wendy!
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Thank you for putting yourself out there and allowing others to know about your pain. It is hard dealing with chronic issues and depression seems to go hand in hand (in your case, butt!) but I firmly believe, when others are aware of things, they may not be able to fix it, but can be much more understanding and many (like me) can pray. I hate that you suffer like you do, but I am very thankful that I have the privilege of praying for you. You are an amazing woman, Irene. Just know that you are always close in my thoughts and prayers.
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Thank You so much Donna. I truly appreciate all the prayer.
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My dear
You are a brave and wise young woman…thank you for sharing….you are never alone…you KNOW that I have you in my prayers 👍🏻❤😊
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Brave? Meh… Wise? Darn right! 😉 LOL XO
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I have experienced so very deep sores. I have been using Manuka honey to clear some things. It is from New Zealand. I purchased in the health food store. I don’t know if it will help you. Just putting it out there for you to research
Kathryn from Emmanuel
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Thank you for the suggestion!
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You my dear friend are amazing and brave and everything good! I wish I had the magical powers to remove all of this pain and suffering both physically and mentally away from you! You are a wonderful and beautiful person and do NOT deserve what you are going through at all! Thank you also for taking the time to explain to us and tell us all about what is going on with you. And please continue to do so as I will continue to pray for you and send you healing and positivity vibes your way as well as many hugs of all shapes, form and sizes! xoxox ❤
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Thank you so much Tracy. Now you made me all weepy. LOL Now I have put it out there-I will make sure I continue to talk about it. It certainly has become quite the popular post. You can tell no one talks about it (Or people are just really curious about my tush? LOL)
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Oh Irene; I do not have this same issue, butt lol, but I have been bleeding from my ass for years and I have been told for years hemorrhoids but I don’t have hemorrhoids I have had a few scopes nothing, grrrr. One day I had enough I sat on the toilet and it filled with blood it scared me so bad; I had to be my own advocate. So I went up to hospital saw DR and finger up the ass. So embarrassing scared yet nothing, finally I seen a recital DR and had to have another scope yeah NOT this time in the operating room the could not find my vein so for the procedure I had to be awake like really!!! Tv so I could watch oh my. Turns out I have had irritable bowl syndrome + a fisher at bottom of my rectume that kept opening and reopening they can’t really do much for it when it heals but every so often 2-3 month it happens. Plus here’s a kicker, 3 months ago I had surgery because I had bowel upstructuion DR fixed me up and no instead of IBS I have to take stool softners now crazy ass problems. It does take over your life but like u said fine Humor on the good days it not perfect but it helps. I have been much healthier the past 3 months then I have had in years. I wish you health and answers and no you are definitely not alone love ya friend.
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Oh Tara that is awful! I am so sorry that you have been going through that. One thing I am sure you have learned with your problem is that it is AMAZING how life can suck when that area of your body is not cooperating and how painful it really is. I used to think my back was the worst thing- nope- try having a broken tush. LOL I hope that you don’t have any more problems and it can heal for you once and for all! xo
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What a story of what your life has become. You are a true hero for others. This article should help others who suffer with pain and disabilities. My prayers are with you and your family. Knowing God is in your life and is there with you always should be a big help. I always remember that God does not let us go through something that he knows we cannot handle. Through all this you have become a stronger person, a role model for your children, friends and the doctors and nurses. Now that you have written what you have been of through. I know you will be reaching a lot more people who will be helped by you. Prayers and hugs as you continue to seek help for this condition.
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I certainly have an interesting story to tell that is for sure. I hope that they just let me play me in the movie. LOL 😉 I really do hope that people who are also suffering from the same thing will find my post and know they aren’t alone. I went years without realizing how common this can be- it’s always nice to talk to others who have similar experiences. Thank you for all your support and prayer!
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So sorry you have to insure all that pain and torture. Hopefully someone can figure out something to help you. Thank you for sharing and I am sure you helped others with the same problem. God bless you and I wish you the best
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Thank You Kathy!
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Wow that BUMMED me out!! Your strength is amazing. Love xo
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I am sorry it ‘bummed’ you out Val. I have that effect on people. 😉 Must be cause I am a Mommy-Sore-Ass! hehehehehe xoxo
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This is such a sad state to be in… Yet you write so humorously! I appreciate your strength. But I wonder what ruptured when you gave birth. Do you know the exact cause of your problem?
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Thank you. I like my funny- it’s get me through. LOL Even the doctors are never 100% sure why me- I actually had to go through testing for Crohn’s Disease (I had been told for years that is what I had only to have a specialist re-diagnose me last year) …Apparently people with Crohn’s are more likely to develop these fistulas (though they can be caused by other things) but they tell me that isn’t what happened with my case. It was just a freak occurrence. I have been told that because it was a birthing accident that ‘IF’ it can eventually be corrected and the correction holds- I will most likely never suffer another fistula and abscess-unlike someone with Crohn’s and I can move on with my life. Every case though is different.
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Oh dear! I’m so sorry to hear this. I’m sure your strength and your support system you mentioned will help you get through. I appreciate you sharing your thoughts.
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Thanks for writing something so raw and honest x
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Thank you for taking the time to read and learning about my issue. 🙂
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I will put out to the Universe that you are healed. Continue to stay strong. I wish you well.
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For someone who has such a pain in the ass you have not lost your sense of humor. I am amazed at your strength, the size of your heart, and your ability to tell such a tale. Thank you dinosaur lady.
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It’s comforting to hear from a fellow suffer. I myself have been suffering for the last 4 years on my fourth perianal abscess and now they have seen I have a fistula.
The impact it has on your life is crazy, because I have a seton stich I am trying to work out how to go to the toilet and keep clean and work.
If any of you have any advice please let me know.
I laughed at fifty shades of packing, I have 3 bags full of dressings, gloves, packing and bits that are required daily. I think this is the part that grates on me!
Also there are other things like the undignified task of asking for partner to help me go to the toilet.
In all this chaos I need to try a 100 times harder to remember me and things that I enjoy as person.
Oftern I do feel isolated because people can only understand so much, people understand that an abscess is painful but of course there’s more to it all than just that.
I would welcome all advice and comments with living with a seton.
Thank you for your time if you have read this post.
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I am so sorry to hear that you are part of my club. What a club to be in eh? We can be Seton Stitch buddies! LOL I just had one placed in just under two weeks ago- my new surgeon wanted to get at it fast while I was still healing from the abscess. I am still adjusting to life with it. It’s irritating- but so far so good. I’ll take the stitch irritating me before the actual abscess…. I’m still learning to live with this stitch- but so far so good. *knock on wood* I finally stopped the painkillers the other day and I have slowly been trying to return to a routine. My big thing is rest- every time I get an abscess or go through the awful drain and packing stages…I make sure I rest so it doesn’t immediately reoccur- so I have applied this to my Seton Stitch as well. Keeping the area is clean is a pain. The way I have learned to do it is by taking multiple sitz baths a day- I even sprinkle a bit of salt in the water which was a trick that my earlier surgeons and nurses drove home with me (I have had other nurses disagree- saying it was unnecessary to add salt but I have never had trouble with the salt water) – I have at times used a folded paper-towel to cover and ‘deflect’ bowel movements from the open wound to avoid infection. It makes going to the bathroom a bit difficult- but I would rather deflect as much as I can and save myself from possible infection. I blot instead of wipe- sometimes I use babywipes to help and then I always take a sitz bath immediately after a BM followed by a quick spray with the shower. (I will admit I really hate going to the bathroom right now- I usually cuss and swear my way through the process it is so annoying) I use folded guaze (One of my nurses loving named ‘the tootsie roll method’) tucked between my cheeks over the wound- which I change multiple times a day as it drains.
I don’t know about you- but with this Seton I am noticing that wearing denim jeans is a nightmare. They are NOT comfortable with this thing- which I learned the hard way just the other day. I have made it my rule to wear loose-comfy pants or maybe even skirts/dresses the more I go out and about with this stupid thing in. (I can be a bit of a diva- so it pains me to look like I am always at the gym LOL)
I know that humor always gets me through. I have made it my mission while I am adjusting to life with this thing to keep up with comedy shows and such just to keep my mood up- I even took up a new hobby to cheer me up as I recovered. I have written a few other posts since this post and my surgeries etc…about my journey so far- You are welcome to take a look. I have been working on a new post updating everyone on the latest- I hope to drop it after I have seen my surgeon on Thursday and get his update-
Is this your first try with the Seton Stitch? How long have they told you that you need to have it in? Mine is up in the air- but I am told I will probably have multiple surgeries and stitches before I am close to healed (And if it fails he is talking about doing something called a ‘lift’?) I do have good news that I do have a couple of friends who have been there-done that with the stitch and so far- so good…. so Hopefully you and I can join the Seton Success squad and quit with these things once and for all! Don’t hesitate to contact me if you need to vent or chat about it. I know how difficult it is to find people who also struggle. I am glad you found my blog! Hope to chat soon! 🙂
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Thank you for reply it means alot to me 😊.
With the seton stitch I have only had it a week so still getting used to it.
I have a review in about 6 weeks with my surgeon to discuss my next op.
I have felt quite alone because even when I get the abscess packed by the nurse they used ‘Google’ as they weren’t sure how to deal with it!!!
Then the whole going to the toilet thing, well what can I say unfortunately you know the drama only too well. It has put me off eating and certainly not socially, at the moment I am not up to dealing with going to the toilet out and about.
Then work at the moment I am signed off by my doctor, but firstly I’m not sure how I can sit down for 9/10 hours a day (I work in an office). The only thing I can think of doing is a reduced shift of 6 hours a day if they will except that!?!
At the moment I feel it’s difficult to plan ahead. Generally speaking I am normally a positive person, but this has just really got to me. I think because it’s difficult for other people to understand.
A question for you leading up to having any abscesses did you find that it had an impact on your memory? It’s just something I have noticed with each abscess the months leading up to it I feel a bit slower and not as quick to remember things.
I do hope we both and other fellow suffers can all be part of the ‘Seton Success Squad’
😃.
Thank you once again.
Olivia 😊
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Hey Olivia! I don’t think it impacted my memory per say- but the stress of these things certainly has impacted my mood, my depression, my anxiety..and those have played roles in my memory at times…Suffering from these stupid things and learning to adjust likes to mess with the mind. I hope you can figure out what to do in regards to your work. Hopefully they can understand that you need to modify your schedule. I know some of my friends who can’t sit a lot (for various reasons) have tried those leaning seat/desks and enjoy them. I hear you on the socializing. I feel very awkward and limited right now myself. Right now while I adjust I seem to have a time limit on how much ‘out of the house’ time I can take and I certainly don’t want to get caught with a bathroom situation in a public restroom. It really is hard when people don’t understand- I have had run in’s with friends who get mad at me because I didn’t attend some event or people think I am exaggerating the pain. That is one of the reasons I am so outspoken about it. They’re lucky they have no idea what a pain in the ass these things are (Bahahaha- I love my bum puns) it really does help when we find each other and can commiserate!
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Your support has been of great comfort, thank you.
Xxxx
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Me again 😊I need your advice.
I am having a difficult few days with pain from the seton stitch, will I ever get used to it?
Finding it difficult to move around my home, trying to keep my life together. I saw a nurse for packing with the abscess and I was asking for her advice and she couldn’t give any, also my doctor said that as I am seeing a specialist there’s not much he can do apart from prescribe pain meds.
My work seem to understanding for now, I said that I would need to build up my hours and it may just vary on the day to how I am feeling.
For pain relief I am taking tramodol 50mg x8 per day but it is not enough, the only thing that has helped is morphine.
What have you found good for pain relief?
I think the one thing that has come out of this is that it has made me more determined in life.
I really do appreciate your help.
Olivia Xxx
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That’s tough…. I just saw my surgeon yesterday (Update etc is in the post Happy Happy Happy)- and he told me that some people take to the Seton and can live with them for quite awhile and others can’t handle them. He tells me I am adjusting well to it. I find that the worst is over pain-wise- I have been off painkillers for a few days and even then I was only taking on Tramadol a day. (With the exception of the first few days after surgery when I was taking more) After awhile I just get used to the pain and it isn’t ‘as bad’ – I push myself to accept certain levels of it and only medicate when I reach my limit. I use meditation and deflecting techniques. It takes some practice. It sounds like you may be having different trouble… but I would watch the painkillers- you really don’t want to get addicted and they can hurt your organs. Is there a time of day when you notice the pain is somewhat less? Where you ‘may’ be able to get away with not taking them as much? That way maybe you can build up a bit of immunity to some of the pain? I know with every abscess I have had and now with the Seton- there is always to some degree pain. I can’t even take certain painkillers because they don’t work on me. When the pain gets a bit much- sometimes I just lay down and take the pressure off and distract myself with a book instead of taking a painkiller.I don’t know if you have tried a distraction method or rest… but maybe that will help? I hope that you learn to adjust to it. I know that two weeks while I am doing a lot more- I still hit a limit where I say ‘I am done’. Yesterday was a rough evening/night after I saw the doc with the exam. My pain was probably the highest it had been in a week. Sorry if none of this really helps. Fingers crossed you adjust as soon!
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I will certainly try the distraction method 🙂
I am glad your visit to your surgeon went well, I am waiting for my appointment to come through.
Today was a slightly better day pain wise.
I contacted my work and they said that they would do what they can to help, which is good news.
Still not sure how long I will be able to sit down for, at home I try to do house chores but stop if it’s too much.
It is amazing how we can adjust to anything! All this just makes us stronger 🙂
Chat soon,
Olivia Xxxx
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Hope that you are ok.
I have had some good news
the area where I had my abscess has healed really well. The only thing is I still have times that the seton stich really causes so much pain, but I do get a few more times now whereby I almost forget that I have it in!
Strange what you can get used to 😉
I have an appointment with my surgeon in about 6 weeks time to discuss the next steps.
How’s everything going for you?
Take care,
Olivia 😄
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Glad to hear you are doing much better! I was wondering how you were! The stitch sucks. I was at the mall shopping today and after an hour- I started getting this horrid stabbing pains from the wound through my butt- down into my right foot. I went home. Apparently one hour is my max for being on my feet and walking. My whole body hurts now. I find I have good days and my bad days Chat soon!
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Lovely to hear from you 😊
With exercise I agree an hour is my limit as well then the pain starts up, normally I like to exercise 4/5 times a week so it’s difficult not doing as much.
However lots of things lately have made me realise that I am greatful for everything (having abscesses and fistula’s is a pain in the ass however I am trusting my surgeon to fix me).
This week I am going to go back to work, so I will see how I get on. I have said that I will try a few hours and build up, so I am hoping that it will not too painful.
Take care chat soon.
Olivia 😄
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Hi there hope your ok 😄
I did it – my first day back in the office only 3 hours but at least I tried ☺
Looking to work from home next week.
At the start of the week I had a couple of days of pain, which was on a similar level to abscess pain, and I did think one may have started 😂 but thankfully one hadn’t😃.
Do you ever find if you have either sat/slept/walked in the wrong way or any kind of movement it kind of stirs the wasps nest = seton stitch 😭?
On my check up with the nurse she said that it seems ok, although she then said where the seton stich goes through the abscess there was a part that did not seem to be healing.
Something that I have forgotten to ask you, do you or have you had any different food cravings?
All the times I have ever been recovering from abscess surgery I have huge cravings for meat and fish! As well as sweet foods, I even dream of meat and fish to eat.
Hope to hear from you soon, your seton friend.
(Makes it sound like a glamorous club – if only!!!)
Olivia Xxx
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Thank you for sharing this. This is peer support at its best. You may be helping people you don’t even know. I have had lots of sores that required packing but with my lack of feeling I didn’t have the pain. I had 12 wounds at once and am now completely healed. I never took no as an answer and just expected that God would heal me in his time. Again thanks for sharing.
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Ouch ! great post, you’re dinosaur joke had me!
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Oh. My. Gosh! I am SO sorry! Nothing I could say literally helps this but I appreciate your writing about it so I know what people are going through.
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