OK, no blood clots, all blood work came back normal. Now I'm getting other tests done.
Did not check with my lymphedema Dr if it was OK to do this test, but last night I had a Nerve Conduction Velocity Test done on my legs. I had it done on my hands/arms before and it was painful, but on the legs…oh my God, I wanted to die. The pain was horrible. Every time the guy shocked me I wanted to scream.
As I was writing this, I got a call from the Dr with my results - Abnormal. Yay for something coming back abnormal! Now they know I'm not making this up!! They said if I'm no longer in pain then I don't have to come in for a follow-up. I'm still in pain. So I go back in tomorrow for an Arterial Ultrasound on my legs and at that point I'll discuss these results and keep all of you posted.
What? This horrible pain I'm in not caused by the one thing that causes all my legs pain-lymphedema? How can that be? My LE doc thinks my lymphedema is under control, which means there shouldn't be anything different with the amount of pain/swelling I always feel. So this pain, which has been consuming me for the past 2 weeks or so has to do with what? OK, so I take fertility meds. It could be from that? Maybe. I'm waiting for my fertility doc to call me back. There is a serious side effect of leg/calf pain and swelling from taking progesterone. Maybe it's that? This is so annoying and frustrating.
I called my HR lady at work and told her what was going on, 'cause, no surprise, I called out again. She's sending me all the paperwork for a medical leave and long term disability. I'll figure out what I'm gonna do once I read through everything. My lymphedema doc won't fill out the medical leave form 'cause she thinks my pain doesn't stem from the lymphedema. So if it is the meds I'm on, maybe my fertility doc will fill it out. And if he doesn't, then I guess I have to go to my primary doc to get all kinds of tests done to see what's causing this terrible pain.
Right now I'm reclining with my legs elevated in hopes that my pain will subside soon. I know that there are many other people in the world that have it worse than me right now and I know I should be thankful I still have the ability to walk and be somewhat functional. But can I tell you a secret? I hate that old cliche: "It could be worse." Well ya know what, it is worse for me right now. Everyone has their own problems and we can always tell everyone with medical issues, hard times, or anything else that's going on with them, that "it can be worse." That's just something to tell people so they can, what? Cheer up? It's a load of bull. My problem is real and I'm facing it right now. Yeah, it can be worse, but right now this is what it is and hopefully it doesn't get worse. Sorry about my ranting. But it's true.
Went to my lymphedema doc today. Told them about the pain I've been having and they think it might be due to some medications I'm on. Unfortunately I have to take the meds so I'm hoping that the pain will subside soon, otherwise I don't know what I'm gonna do.
My legs still hurt, my left one more than the right. It feels like someone used my thigh as a punching bag. Or…you know the feeling when you've done so many squats and your thighs burn? That's how it feels. I saw my HR lady at work today to get new FML forms to fill out. She could tell I was in a lot of pain, which is good, I guess, 'cause then maybe they can tell I'm not making this up. Anyway, got the forms and she asked if a medical leave would be a consideration. I would take a medical leave if it would help, but with lymphedema you could be off your feet for a week and the next time you're on them for even just half a day, you can start to have problems again. Then she asked if medical disability would be an option. I pay for it as part of my benefits from work. I guess it's something to look into. The only thing is that I have to be out of work for 6 months before I would start getting paid. Hmm. What to do?
My husband is very supportive with all that is going on. I love him to death. He even rubs my feet and gives me lymphedema massages when I really hurt. I know he can't possibly understand how this feels, as no one can who doesn't have lymphedema, but he tries so hard to understand. I hope that everyone out there who suffers from this or any other disease has a support system at home. It can feel really lonely at times, but just having someone there who loves you and tries to make you laugh when you're down, is sometimes all you need to get through the day.
Ok, so I gave in and wrapped my legs today. After a week of horrible pain and calling out of work, even today I was supposed to work and called out, so I wrapped.
I hate wrapping. Not presents, 'cause that's always fun, but I hate to wrap my legs. I actually don't ever do it. Haven't had my legs wrapped since my treatment 3 years ago. First time I wrapped by myself and I started with my left leg 'cause it hurts the most. Got all the way up to my groin…'cause unfortunately I swell from my toes to my hips, and guess what? I had to take the bandages off and start all over again. I wrapped too tight and couldn't feel my toes. I guess practice makes perfect. Hopefully I don't need to practice this too many times though. It's annoying.
I'm Mummified
So now I am all wrapped and no where to go. I actually can't go anywhere like this. I had orthopedic shoes when I was going through treatment so I could go to work wrapped up, but I threw them out. They were so ugly and I was hoping never to have to do this again. Now looking back, I should've kept them. Even if I wasn't ever going to need them again, at least I would have them just in case. Oh well. Lesson learned.
I'm supposed to wrap my toes individually, but I don't have any gauze. I guess I'll buy some the next time I'm at the store. While looking up Lymphedema on Google videos, I came across a video of a woman wrapping her legs. She uses foam for padding which I thought was weird. Does anybody else do that? Here's the video if anyone is curious on how to wrap for lymphedema (again, I don't use foam):
I just read some nonsense: "lymphedema doesn't trigger pain but often a sense of heaviness."
What a load of BS! True, lymphedema makes your affected limb(s) feel heavy, but it also most definitely causes pain! I have pain right now. Lots of it. Yesterday the pain was basically throughout my legs. The pain was really concentrated in my upper thighs and knees. My upper outer thighs were numb and had a deeper pain. I hate that because even though the numbness causes me not to feel anything on the surface (I could be stabbed and probably wouldn't feel it), it does cause me to feel everything deeper down. It's hard to explain. Today, my pain moved lower down. My ankles and feet feel like they are going to explode. I feel pulled muscles coming on in the arches of my feet. It is so painful and I'm trying not to move. I have my legs elevated and hopefully this pain will get better real soon.
I have missed work too. I have Family Medical Leave (FML) at work because of this. This is my day-to-day FML. Unfortunately, I have had other medical issues this past year which caused me to use FML for those as well. The unfortunate part is that FML is counted at a certain amount of time off in a rotating calendar year regardless of how many different uses. So the amount of time I would need off for lymphedema would be completely fine in a rotating calendar year. I wouldn't use up all of the time, but with the other medical issues I have now used up all of my FML time. This is not good for me. I wish they counted each medical issue separately but they don't. I have already been put on a verbal warning for my work dependability and had to call out due to my lymphedema after. Now I will be written up and then the next time I call out, I will be fired. I completely understand their point of view: you need people to be at work to make the business a success. I also know that they may be scared to fire someone with a medical disability, as most places probably would be for fear of a lawsuit. They are going back and forth trying to figure out what to do with me because, honestly, it is unrealistic that I wouldn't call out again. Just look at yesterday and today. They mentioned part-time to me, which sounded great - better part-time than lose my job. But now they said that they can't offer me part-time because if they offer it to me, they'll have to offer it to everyone. Whatever. I wish my photography made me enough money to not work at all. That would solve all my problems!
