Two weeks ago I felt an alien and strange emotion.
It was something I am not used to feeling.
It was hope.
Hope of all things.
Stay tuned my friends.
Category: chronic pain
Two weeks ago I felt an alien and strange emotion.
It was something I am not used to feeling.
It was hope.
Hope of all things.
Stay tuned my friends.
If you have made it this far, you are wondering what in the heck this subject heading is about. Sure, I made it obscure, but after the past half of a year of watching my husband and seeing what is going on with his health, I had to comment.
After six years of living with a limb salvage patient suffering with pancytopenia and a hot mess combo of more.., I have noticed a pattern of good days and bad. Like most people dealing with chronic pain, they can present better to friends and family for a few days and then after that, their resources are gone and boom! Mic drop. Nothing left, just bed or couch-bound.
Six years of using a cane on his dominant arm to compensate for his bad leg when it collapses when he walks has taken a toll. It’s so sore it keeps him awake and uncomfortable past the pain relief he uses for his back and limb salvage in his leg. The twisting way he has to walk when he doesn’t wear the uncomfortable brace lurches his hip in a way they aren’t meant to twist. Degeneration is happening.
He has tried cortisone in his shoulder joint and it was as if he got shot up with water. I have had them in the past for my own health issues and they provided help, but for some reason my shoulder has been resistant to any sort of change too.
On a positive note, I had RF Ablation on both of my hips over 5 months ago and the deep bone pain is gone. I wish I could get my husband to try it as I hardly have to use any sort of Tylenol or anything to help with the aches! To me, it is as if I had received a gift from God.
The past few years have made me very aware of my health and how much I need to take care of myself for the rest of my family. If you were suffering from anything, wouldn’t you get it taken care of or try to get yourself in as best of a way of feeling better as you could? Why would you want to make your family suffer in watching you endure constant suffering?? There are other things that can be done to help chronic pain such as RF Ablation. It has helped me so much. I see reports all of the time about HBOT (Hyperbaric Oxygen Therapy) and how much it helps physical and mental issues. Also, there is a new shot that goes in the Ganglion nerve in the neck that helps reduce the symptoms of PTSD right away.
When do you stop researching as a caregiver and when do you push and how do you know the difference? I recognize it as poking a literal bear. Make a recommendation and then gingerly tap dance back to my corner.
So what do you do?? Any of you veteran caregivers of veterans have any advice?
Five years ago, he awoke in a hospital bed, groggy with morphine and other pain killers used when his femur was blasted open in three places. The force of the blast he survived reverberated throughout his whole body. This creates wounds and issues that most people don’t survive. Ten years ago if this had happened, I would be writing about entirely different topics. I am very thankful.
He heard a group of doctors and nurses talking amongst themselves in Landshtul, Germany. I am very thankful for their quick care and action on trying to keep him full of blood. He had to have 15 units of blood between leaving Ghazni, arriving at Bagrum Airforce Base, and making it to Germany. They did not think they would have time to get us there in time to see us alive as it takes a bit of time to rush civilians overseas. However, God was on our side and got him back to San Antonio, Texas to Brooke Army Medical Center.
Back to the groggy soldier in the hospital room. Todd was hovering between hazy dreams, nightmares, and consciousness. He saw the group of people chatting in the corner and all of a sudden one of them yelled,”Hey Sarge, can you move your foot at all?” Todd was able to barely move two toes. They yelled,”Ok, you get to keep your leg.” Todd says that was definitely a conversation he was glad to be awake for.
Fast forward five years from there, and he has titanium from his right knee to his right hip. They call it a “Limb Salvage,” when they can save a limb, even though operating on it a bunch and keeping it can create a hellish world of pain. When your injuries are above the knee, and in his place all the way up to his hip, his chance for a prosthetic that would work is pretty null. To have to sit without upper thighs to cushion your tail bone would be so much pain. Most people don’t realize that once you have one amputation, there are many revisions required for your stump to fit into a socket, which is then placed inside neoprene, foam, and other cushioning agents before the hardware is fitted.
What muscle he has left in his thigh is full of Heterotopic Ossification, which is bone growth that the body shoots out during traumatic injuries. It creates spiky bone growths in between the muscle and bone surface, so if Todd sits at something that hits his leg mid thigh, such as a bistro or bar stool, it causes major pain as if a million needles were shooting into his leg. This is also something amputees can suffer from as well. You can see this on your soldier’s X-ray as it looks like a ghostly cloud around the bone. Kind of eerie looking.
When I see him hurting, which is never ending, I wish they removed the leg, but I know from seeing other guys with the same issue who have opted for salvage to amputation, they aren’t doing much better. The femur damage to his bone marrow has caused a blood disorder called Pancytopenia, which means he has too many of one type of white blood cells, too little of another, and just to make it interesting, his reds fluctuate too. For the most part, this only scares me when its flu season or when there are nasty coughing people in the waiting room as his levels change constantly and that makes the difference of energy or no energy, on top of the lack of energy issues from pain, Traumatic Brain Injury and the lack of sleep that the nightmares cause. However, we make a go of things and on good days we are team kick ass. On the not so good days, we plan for low key events.
This is not a piece to share gloom and doom, but to educate– I want to share some resources and ideas on how to deal with it. Elevation is key as his lymphatic system was destroyed. Getting the limb elevated up to 20 degrees- as long as its above the level of his chest will help drain the excess fluid out of the limb, which helps. As the day goes on, it fills up and gets more painful for him. Giving your spouse adequate time for that helps.
If you are active duty and in the Warrior Transition Unit, contact your Nurse Case Manager about a chair that reclines to zero gravity. This will help a ton! They will get Tricare’s Wounded Warrior segment to approve it. It is by Goldentech (made in America) and we got ours and it comes with an electric recliner so it won’t jar his injured back or leg. We also got their durable medical goods department to get him a new bed, also by Goldentech that is made out of similar to a temperopedic. No pressure on his limb and he can elevate the foot and head of his bed. Even can turn him into a cranky veteran taco, if I feel inclined to mess with him. 🙂
If you are dealing with the VA, contact your Case Manager and if you don’t know who that is, call your generic VA 800 number in your area and ask. Provide the warriors name, last four digits and they can provide you with the name and number of who that person is. The Case Manager is your advocate to line your veteran up with the specialists and services you need. Most likely their durable goods department would get something like that for you there. I don’t know. Ours we got from Tricare are still good. However you can get a recumbent bicycle from the VA from durable goods. I strongly recommend that. Just because your veteran is hurt, they still need to find a way to get some cardio and burn off some rage.
Also, the independence fund will provide your warrior with a track chair or zoomability cart. You need to check it out and apply, its free for them as long as your VA disability shows mobility impairment. Easy to provide. You can see it at www.independencefund.org.
My husband has had leg braces made by Prosthetics at the Temple, Texas VA and at the Center For the Intrepid in Fort Sam, Texas, He received his first brace, the IEFO which is a cool looking carbon fiber rigid brace that goes from below the knee and goes even into his foot bed. The goal of this particular one is to stop the motion of his ankle (ironically the only good joint left in that leg) and his calf. He has no articulating ability on moving his foot. However, if he isn’t super tired in his good leg, it’s good for inclement weather as there is no machinery. It is hard to get shoes to fit that as the footbed makes it so huge we have to buy two pairs of shoes to fit it! The second brace we got is the Otterbock Sensor Walk brace which was made via the Hanger Clinic in Round Rock Texas. Same place that made the cool tail prosthetic for that movie Dolphin Tale.
This brace is bad ass- has bionic sensors under his footbed that communicate with the knee gears in it to detect where is gait breaks down. One of the coolest things I have ever seen. However the gear sticks out so far on the right side, finding pants that cover it is difficult, haven’t found any yet. I think I am going to have to cut the seams out along the gear. Todd doesn’t really want it to show so people don’t stare, but the whirring sound of the bionic gears make them look so at this point, who cares. I will stare them back down!! It made me cry the first time I saw him wear it as he walked almost like his pre-injury walk. The VA’s Prosthetic department will help you find shoes that fit any leg brace they fabricate for you. Ours gave him a nice pair of dress shoes and a pair of sneakers. Awesome!
Limitations in this also is the brace goes way up his femur so it presses on his scar tissue after a while. The battery packs can run out without notice, so you must have a back up. Learned this the hard way on our vacation. LOL. So bring two braces with you!! Our bedroom looks like a brace factory as we can’t fit them in our tiny closet, but oh well. No one lives in that part of the house. I want him to have easy access to his legs. We also bought an AC adapter you can plug into the car’s power outlet and charge it while we are on road trips. Efficiency!
So, bottom line- get your veteran physical therapy to strengthen their core muscles, back, thighs and arms. This is mandatory. No matter if they are amputees or limb salvage, they will depend on those muscles more than the average person. Pain management is important too. Get them to a specific pain management doctor. Supplements such as Vitamin D3, Magnesium, and B12 tend to be depleted in people suffering from chronic pain. His doctor has him on that and please check with yours before you take them. Also, allowing time in a day to elevate is a necessity. Hard to do on a day of non-stop doctor appointments, but on a day of just being home, its critical. Heating pads help when its an old injury.
Back in January, I started a support group for fellow wives of wounded soldiers in the Austin, Texas area. When I first started it, I was unsure how it was going to work out and worried that I might not be ready for something like this. It is hard to take on projects when your soldier does not allow you to get your 7 or 8 hours of sleep in one straight block. At my old age, I am not so able to thrive without rest. Funny how I took that for granted. I used to go one whole day without sleep when I had my own business. Talk about drive. I am still driven, just in other ways now.
Back to the group- I have found it to be one of the best things I have ever done. It has helped me a lot and I have seen where it has been useful for some of the other ladies, too. There is room for growth and I have big plans for it. I am so happy that others in similar situations don’t feel as alone anymore. It is something I am very glad I did. I get to hear about successes first hand from others trying different methods on fixing their husbands.
So, here is a big question about drive, research, and pushing. For all of you with wounded soldiers at home suffering with TBI (Traumatic Brain Injury), PTSD (Post Traumatic Stress Disorder), and other debilitating health issues, when is enough enough? I can’t seem to stop researching the latest and newest methods to help restore cognitive function. I am always googleing TBI, PTSD to see if there are new strategies in helping to remedy the side effects. Through one of my friend’s blogs, I see there are injections that are being given to soldiers suffering with PTSD and that they do help a lot on reducing anxiety. However they have to be repeated every 3-4 months. To get the shot, you have to go to the clinic, which is far from here. So my hubby would have to endure the painful journey of getting there as well as receiving the injection, which would be another kind of pain. When I started talking to him about it as I got excited when I saw Kristle’s blog, he said he was not interested.
What? You are not interested? You like having PTSD? You like having the nightmares that make you literally sweat out a gallon of sweat each night and have the flashbacks? You like waking up sick to your stomach when you experience one of your many horrible wartime experiences? How can you not want to get rid of this? How can you not want to try something new to get it eliminated?
I got upset. I thought WTF- why am I doing all of this research to help him regain his short term memory issues and other cognitive deficits that really frustrate him if he does not even want to try something that has a documented success rate?
He won’t even try acupuncture and I have many wives tell me how much it has helped their soldiers with pain and also some of their anxiety. Anxiety is the huge feeding pool which fuels PTSD. This is not fair. I hear about all sorts of new treatments and things to try and he won’t even consider it.
What do you ladies do? I am frustrated. I don’t want things to be like this for the rest of our life. I want him to have fulfillment from what he does and to feel good about himself again. I want him to one day wake up without the chronic pain that knocks him down and makes him sick to his stomach.
Is that too much to ask for? Do I just stop and give up?
When I look at my husband, who is still young at age 41 and has a life left in front of him- I can’t imagine him not trying something to help him feel more like he used to. Would he want to spend the next 25-30 years suffering with chronic pain? Would he want to keep going and keep the blinders on to alternative treatments around him?
Can I just stop and let him control what he tries next? Can I let go of this?