This morning I am stiff and sore and a bit grumpy! Normally I am chipper and happy and annoying! Today I want to put a sign up to tell everyone shop is closed. I just didn’t sleep last night. Every joint in my body hurts, my nerves in my legs have been bothering me more than they normally do which is annoying. I take medication to help, but it’s looking like that medication might need to be adjusted. I normally rather enjoy St. Patrick’s Day. Today it feels like any other day of the week. I didn’t even put on a green shirt, the wifey commented on my lack of enthusiasm for the day, I gave her a glare.
I do have a bit of green on my shirt for all those inquiring minds. This month has been hard. They think I might have frozen shoulder syndrome which means that my right shoulder has been particularly sensitive. I am also having problems with my hand falling asleep again which is equally annoying. When both of my arms would go totally numb I got used to having my arms and hands numb, but since the neck surgery I have rather enjoyed having feeling back in my hands. I am also noticing that I am increasingly having problems opening jars, medication bottles, etc which I am not sure if that is due to the frozen shoulder or something else. I have an evaluation next week and I am going to ask the person doing the eval if they are related or something else.
I am trying to keep my head up and enjoying the ride, but this has just been a hard month. I have had 2 deaths in the family and I think that is taking it’s toll on me emotionally. I am emotionally exhausted at this point . We all know that when you are drained emotionally, physically it can make you a bit grumpy. That being said I am trying to take a step back and remembering all those self-care tips and not over tax myself.
I think that is one thing I have learned from all of this. Do not try to play Superwoman, because you will never be Superwoman again. I physically cannot play the part. I do not have to play the part, and no one expects me to play the part. I need to recognize my own limitations and just breathe.
Recovery is like a cha-cha you take lots of steps forward and then you go back. So I had been making progress with my neck. The imaging actually looked so well that I don’t need any more imaging on my neck right now. It’s healing properly! It’s fusing the way it’s supposed to, which is such a blessing! I was so glad to hear that after all the headaches with my back (more on that in a minute). I have had so much radiation from x-rays, cat scans and MRIs over the last 4-6 years that the doctors are getting concerned because I am young. So the neurosurgeon in January decided to only do a cat scan of my back, that my neck looked stable.
So we did a cat scan of my back and this time there is enough bone growth to consider me stable. It still has not fully fused (which is highly frustrating, but I’ll take what I can get) but there is enough bone growth that I am out of the woods finally. The hardware is stable, and they don’t feel like it will break off. There is some peace about that. When people talk about metal fatigue and how it could break and puncture you, it is a little disconcerting. However with my history I figure that’s the least of my concerns!
So the real problem I am having is with my shoulder. I think that when both of my arms were totally numb I possibly tore my rotator cuff. I didn’t know any better because I had no feeling and now that I have feeling back, it has been bothering me since about October last year. We have also been doing physical therapy on it since October last year. I will get better for a bit and then it gets worse again. So this past week it has gotten a lot worse for no apparent reason and I finally have broken down and made an appointment with the orthopedic doctor.
The neurosurgeon doctor and the physical therapy doctor both agree it’s time to see the orthopedic doctor about my shoulder. So we will see what he says, of course I could be wrong and it could be something totally different. I just want to get to the bottom of it and find out so we can fix it. I just hope I don’t have to have surgery, but this having surgery every year is getting VERY OLD! I stopped wishing for no surgeries because I have learned that is just asking for a surgery to happen, so I am just going to go with the flow and see what happens. All is well no matter what!
So after genetic testing came back positive it’s looking like I will be on blood thinners for the foreseeable future. I am working closely with my hematologist to stay on the best course of action for me with everything. The emergency surgery from December has also pushed back the removal of my IVC filter for a few more months, but I know that will happen when it’s supposed to. I was hoping it would be out already, but everything happens when it’s supposed to and I have faith that I am protected just like in December.
I also had blood work to check all my levels to make sure that things have returned to normal. We felt it would be good to re-check my iron, vitamin, and blood volume. After everything it’s good to make sure no more surprises. I mean birthday surprises are good, anemia, not so much! I have been feeling really run down still which is what we have been concerned about, but that isn’t really anything too new.
My shoulder has been bothering me more so we have been doing more physical therapy exercises to try and strengthen it. I am hoping that will help so I have less pain in it. My knee popped really loud so I’ve been upping my knee rehab at home too hoping that helps, I am also going to get new knee braces soon. That hopefully will help soon. The good part of losing weight is that they are big, the bad part is that they are big.
It will be good. On wards and upwards. ALL IS WELL!
So moving while disabled is hard. I couldn’t move things, I could only pack certain items. I felt useless. We ended up paying someone to take out the big items we were getting rid of because it was just easier. It was an expensive way of doing it but we had limited time and not enough help.
I am glad to be in one place again. Trying to live between houses is so frustrating, you want something and it is ALWAYS in the other location. Now is the even more fun part of UNPACKING which is just as much fun. I can’t do much unpacking because I can’t bend or lift so I can only do so much unpacking.
So I have been doing what I can when I can. I know my wife understands, but I put a lot of pressure on myself. I think its because in the back of my head I still think of all the things I could do BEFORE. I think of how easy this would have been before the injury. I hate that I cannot do as much now as I could have THEN. I have to be gentle with myself but I don’t want to be, I want to push myself and I shouldn’t. I need to slow down and just been patient. I need to give myself a pass sometimes.
So in the last 3 weeks I’ve been in the ER 3 times. The first time I was diagnosed with cellulitis in my leg, was put on antibiotics and it cleared up. Then I was on a Lovonox bridge (blood thinner shots) so I could have my IVC filter removed. I started having stomach pains and spasms. So I go to the ER, the doctor does an x-ray, does an ultrasound and tells me I’m fine. They tell me to take some over the counter medication and send me home.
I take the over the counter medication and in 12 hours I am weak and no better. So we go back to the ER. They run my blood tests again and my iron and blood counts have dropped dramatically in the 12 hours since I was last there. So they run more tests. They then tell me that I have abdominal bleeding. So I’ve gone from you’re fine you are wasting my time to you could be bleeding to death….yes that is my life.
So they start to scramble to figure out where the bleeding is coming from. They do another ultrasound and figure out that I have a hemorrhagic ovarian cyst. So now they are asking if I will accept a blood transfer, and are prepping me for emergency surgery. Apparently because I was on the Lovonox bridge the cyst ruptured and never stopped bleeding.
So we went into surgery and I came out like a champ! I lost a LOT of blood. I am really bruised due to the blood loss, but I am on the mend now. My message in all this is- you know your body. I knew after 12 hours that I was worse, I knew I needed to go back. If I hadn’t gone back I could have bled to death.
I am really happy that I knew to go back, that I went back and they found the real problem. I wish I didn’t have to have another surgery this year, but I am feeling better. I am taking life slow right now, making sure to rest. When you need to slow down life has a way of making sure you get the message!
So we can chalk up getting my cellulitis diagnosed early to being on blood thinners and always being aware of changes in my legs. I was getting ready for bed and noticed a bright red spot on my lower leg and felt it and sure enough it was hot to the touch. So to the ER we headed. After blood work and an ultrasound of my leg it was determined that I did not have a blood clot, but I did have cellulitis.
So the doctor prescribed antibiotics and rest and elevation for 2 days. So I played a lot of video games while I let the swelling in my leg go down again. I am thankful that the antibiotics are working. I know how serious the infection can get, I have had 2 friends spend time in the hospital with the same infection this year.
So the other up coming thing for me is the removal of the IVC filter! I am really looking forward to this! It has done it’s job, but now it’s time for it to go. Every time I see one of those commercials on the TV about the lawsuits I shake my head. That was one of the things my doctor and I discussed before I had mine placed. However we felt the benefits outweighed the risks.
So with the placement I did not need sedation, but now that my neck has been fused I will need it. I understand why, but I was hoping to avoid it. I told the doctor that I’m easy going, and she agreed that I was very informed and laid back. We are doing a Lovonox bridge, which I am grateful for but dislike the bruising. I don’t mind giving myself the shots.
Moving in general sucks, but not being able to help with the moving really sucks. This is the first time that I have moved since being injured. I keep being reminded of how little I can do. I can’t pack because that involves bending, lifting, squatting, or a long list of movements that I physically cannot perform right now. Then I am reminded that when we are actually moving I won’t be able to help there either because oh yeah I can’t lift anything…so yeah…. But I am able to supervise and help with the massive purging that we are doing before we move.
I also got the results back on my genetic testing. So I do NOT have Factor V Leiden which is what my specialists thought I had. I do have a genetic mutation that can cause blood clotting. But it’s a lesser known one. I am also fortunate enough to have 2 variations of the gene..yeah you know me the overachiever! So the hematologist is going to be doing more testing on me when I go back next year to check some other things. This does make me happy that we did the testing. I think knowing that extra piece of the puzzle.
I am starting to feel empowered getting one more piece to a possible one million…one billion..maybe even one trillion piece puzzle! I mean every test that brings us closer to figuring out what the answer is, how we can prevent another incident like last year would be great. I really don’t want another massive blood clot, however my story has helped three people very near and dear to me seek medical help for what they thought were blood clots in their legs. All three times it was cellulitis in varying degrees but in two of the cases the people almost lost their legs to the infection. In one case the person went to the ER because of my story they feared it was a blood clot and they knew how deadly they are and went verses waiting for a doctor’s appointment.
If one person can be saved from my experience then my story, my experience then I feel like I have contributed. Sure I would have rather NOT gone through an almost deadly saddle pulmonary embolism, but I can’t change the past. I can however use my experience, strength and hope to help others!
So talking in my sleep has been going on since I was a child. I would get embarrassed at summer camp because I would talk in my sleep and the other kids would tease me. I have always talked in my sleep, I can’t help it. If I could I would, but you get what you get with me! I have some funny stories from college years when I would talk in my sleep. I scared the crap out of one of my roommates when I whispered her name in my sleep, she wakes up asks me what I need/want, I whisper her name again she asks me again what I want, I shout her name, she shouts back and I start snoring….needless to say I was asleep the entire time.
So I am used to people complaining about my talking while slumbering. I shrug and apologize. I have had the sleep tests done and was diagnosed with sleep apnea. I wear a cpap mask and use a cpap machine every night, and even with that I will still talk on occasion. Well in the last couple of weeks apparently I needed to raise the bar…I have decided that talking in my sleep is not enough. I need to start singing in my sleep. My poor wifey tells me the other morning that I was singing VERY LOUDLY to her in my sleep. Of course I laugh at her and ask if I was at least singing in tune, this does not amuse her. She said she kept gently elbowing me to get me to stop which would quiet my concert for a bit, but then I would start again much to her dismay.
Thankfully she understands that I was not doing this on purpose and she is very loving and did not try to smoother me in my sleep…of course with the cpap mask she would have had to remove it first because placing a pillow over the mask would not have done much good. So we have no idea why I have changed my normal routine of just talking in my sleep to now singing in my sleep, but I find it hilarious, my wife not so much. Of course I’m sleeping through it, she is waking up unable to sleep so I can see why this would be troublesome.
My sleep disorder doctor does believe there is something more going on and we are working on getting more testing done, but we hit a roadblock with the insurance company. So until we can get them to approve the testing he wants done the wifey is going to have to deal with my singing in my sleep. Of course since I know that I am wearing the mask I am making sure to sing loud enough that she can enjoy it, which I think is very kind! I mean if I am going to put on a personal concert at 2am I think she should be able to enjoy every second of it…don’t you agree?
So I got my blood drawn this week for genetic testing for genetic clotting disorders. My doctors believe I have Factor V Leiden. I was tested for several others, but that is the one that they believe I have. I am the one who pushed to be tested. I know this might sound strange to some people, but I am at this point where I just want to know.
Last year’s events changed our lives forever. There is nothing we can do to go back in time and change what happened. My clotting risk went up as soon as I had that saddle pulmonary embolism. I have been working on reducing my risk for a 2nd clot, but I want to know if there is a possible genetic factor we need to be aware of when we are making medical decisions.
Every medical decision is about pros and cons, weighing the positive outcomes against the risks. We know that when it comes to making medical decisions for me we roll the dice. We don’t know what will happen because I’ve had complications, I’ve had unfavorable outcomes, but I’m here. I am alive and walking and here. I take each day with the Grace of God and the joy in my heart. I know how lucky I am to smell the roses and see the sun rise and the sun set. I know how important it is to tell the people around you that you love them. You have today. You have no idea what tomorrow will bring so stop thinking about it. Live in today, live in the present.
The morning of my massive blood clot I made the wifey breakfast in bed and I have not done that in the last year. There is a psychological reason. For a long time we could not bring ourselves to have ham and eggs (which is what I made that morning) because we were instantly brought back to that morning and the fear we felt. Wifey asked if now that it’s been a year if she can have breakfast in bed again..I told her I’d think about it. I honestly hadn’t realized it. It was just something I had stopped doing subconsciously.
There are things in life we can control and there are things we cannot. I cannot control my genetics. They were born with me. There are other things that I can control like my diet the foods that I eat, and the amount of sunlight that I get each day, etc. I am focused on controlling what I can and accepting life on life’s terms. So no matter what the tests results show I am at peace. Nothing has changed inside of me. I am the same person I was yesterday, and I will continue to be the same person tomorrow. This just gives us one more piece of that 1,000 piece puzzle….well with me maybe it’s 5,000….
When you have any major life event there is a before and after. After awhile you can’t remember what life was really like before..you have this rose colored glasses view of your life. You forget how hard life was, you forget the problems you had because life is hard now, life is different now and you long for your before life. I make a lot of jokes about my injuries because it helps me deal with the fact that I will never have my old life back. I will always log roll to get out of bed in the morning. I will always have to watch the placement of my feet when I walk. I will always be careful about blood clots for the rest of my life.
When I was young I was in a major car accident, I survived. I thought that was the worse thing that could ever happen to me. I will be celebrating my wedding anniversary. I remember my wedding day and how excited I was and now I forget what life was like before I was married. You get used to what life is like now.
I am used to going to the doctor all the time, physical therapy every week. Home exercises, working to strengthen the muscles that have weakened. I was talking to one of the doctors this week about permanent nerve damage because in my thigh I have permanent nerve damage and they are concerned that I might also have permanent nerve damage in my arms. There is also a possibility there is permanent nerve damage in my neck, but we think it’s only temporary nerve damage! It’s sad when you get excited about temporary nerve damage.
But for me there will always be a before and after for me. There is a life before all these surgeries and the blood clot, a life that I don’t remember anymore. A life that I barely remember anymore. Life without daily pains, wearing braces, watching where I move, how I move, and what I do. I can’t just do what I want anymore.