Being Swallowed By Lymph

The daily trek through life for a wife and mom living in FL. I will be posting about being disabled as a result of primary lower leg lymphedema but also just my general thoughts on the events of the day.

Friday, September 23, 2005

OK..Its Friday Sept 23rd...Where the heck have I been?

Well...so much has happened since I last posted. Where do I start? First of all...as a Floridian who still has flooding in her yard from the hurricanes last year my heart goes out to those who have faced so much during and after Katrina and for those who now must face Rita. I got angry and upset and often found myself yelling why isn't anyone helping these people? So, I donated where I could, called my Congressmen when I could and talked to everyone I could about doing something about this. Hopefully, in some small way I might have helped just a little. If we all do just something maybe we will make life better for so many.

Next....my therapy really fell through... for two reasons. First, my therapist and I just weren't connecting. As I posted before, I tried to talk with her. I tried to talk about my concerns and issues, and some days she would remember and others....it was like I had never spoke before. Secondly, there was a major financial burden. Even at 20% co-pay therapy every day for months was way too pricey for our family. We did learn a lot about wrapping, and my left leg is wrapped 24/7. I need to get some type of help getting my ankle down and then get a script from my Dr for fitting for stockings. My right is a whole nother story. I need help finding something to keep my ankle safe so that the bones that never healed inside are protected from the compression. Living in a rural area, there aren't very many resources, but I have found a medical supply store that swears there is an ankle guard for just this situation. We have also learned a lot about massage, the main issue there remains getting my husband to do it. Advice would be most welcome.

I promise to write again, I just went through this period of frustration and disappointment with the failure of therapy, that, I couldn't face myself let alone anyone else. Please take care all and share your stories......

Monday, July 25, 2005

Monday and I still have the blues....

Well, I had hoped things would go better on Friday and over the weekend, but alas I was wrong. My therapist was none to pleased with me for removing my wrap off of my right leg. She shrugged it off as just a few cramps. So, without really listening to me she wrapped both legs up again. She was very late to the appointment and it was obvious she wanted to get done so we flew through everything and there was no massage or anything. Well, I tried to leave the wrap on but the pain was intense. Much worse than delivering a baby, and I have done that twice...with no pain medication. I had to remove it and it took my husband hours rubbing my ankle before the pain was even manageable and I could stop crying. Well, when we talked on the phone today she was like...I think you are just sensitive....ugh......UGH.............Also, I won't see her until Tuesday afternoon....that will make 96 hours between wrappings....that is certainly not the acceptable schedule. I will update on how that goes tomorrow.

Friday, July 22, 2005

I am just so fed up already

I can't stand it..... Why am I fed up? Because this whole bandaging thing isn't working for me. I had so looked forward to getting some help for my legs and it has just become one nightmare apt another.

If you don't know what lymphedema is, its a build up of lymph (a body fluid) in a part of the body. Most people see it in women after mastectomy surgery. There are several ways to get lymphedema, mine happens to be hereditary. I had this wonderful Aunt who for my entire life had the world's most swollen legs, unfortunately I rolled the genetic dice and got the same thing. My legs have been "thick" since I was a teen, a prime time for primary lymphedema to rear its ugly head. But, after the birth of my second son in 2001 it became my monster. In what should be the "best years of my life" I suffer everyday with mobility issues. I just want to be able to keep up with the kids.

Anyway, I was finally diagnosed one year ago. It has taken until this month to find someone in my part of the state who can treat this thing. Of course, 3 hurricanes, a move and other illnesses got in the middle of that, but it has been extremely difficult to find treatment. I am the lucky person who has to have a rare disease, in fact, I have two but more on that for another post. Well I started treatment this week. Treatment consists of several weeks of a special massage technique, which isn't bad but can be quite embarrassing for a modest person like me. The other aspect of the treatment is compression bandaging....This is layers and layers of gauze, and cottonlike stuff and more stretch ace bandage type wraps than anyone can ever imagine. After my wrappings I chase the boys around the house pretending to be the Staypuff marshmallow Man, that's how huge these things are. Because of other leg problems I just can't make it. My legs can't move and I am basically stuck in one place. This just isn't feasible. Plus, the muscle cramps I had yesterday were so excruciating I wanted to kick something. Luckily, my husband's middle section was no where near me at the time. I am frustrated because loosing even more mobility when I can barely move as it is and possibly not being able to leave the house...I haven't left in 4 days, I don't think I can get down the stairs is just too much for me. My therapist is coming in two hours, maybe after talking to her my mood will brighten...But....I doubt it........

Thursday, July 21, 2005

Welcome

How does one say hello to those she may never meet?

I just wanted to get started posting a welcome to all who might read this blog. My name is Marybeth and I live in FL. I am 37 and have been married for 15 years. I have two great kids aged 11 and 4. The biggest challenge I am currently facing is the fact that I am disabled. I have several illnesses, but the one giving me the biggest problem is primary lower leg lymphedema. Later on I will post some URLS with additional information on lymphedmia for anyone who might be interested. But, basically, my legs are about 4x their normal size. It makes it very difficult to function and can be quite painful. I started treatments for the illness this week, but there will be more on that later.
Again, welcome and thanks for the opportunity to post my rambings here.