The Dr.'s In

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.

Oh the Pain

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!