Remember Me?

Hi Everybody!!! I bet you are all thinking...did her blogroll finally update? Yes, it sure has. I am back! Boy, do I have SO much to fill you guys in on. I first want to thank you for keeping me on your blogrolls and being so very patient with me. I was going through a "I'm not blog-worthy" stage. I'm going to try to get back into the blogosphere. Please continue to be patient with me. I've been asking Sue for updates since I fell into the blog ditch.

Well lets see. Where shall I begin?

• I am officially unemployed. As of June 1st, I have been added to the ranks of the NJ 9.4% unemployment rate. My boss closed the agency that I worked at. As many of you know, I had a 40+ mile commute each way. He moved to the main office which is over 80+ miles each way from my house. With my legs having lymphedema in them, there was no feasible way for me to make the move with him. I just applied for unemployment, and I call for my first set of "benefits" on June 15th. I'm not enjoying this not getting paid thing. It is a long time to wait for a check because I was used to being paid weekly. Plus, the amount is SO much less than what I was making when I was working. If you all can say a little prayer for me that my finances won't go to pot and that I will be able to find an equal or better paying job that is closer to my house, it would be greatly appreciated.
• The "Wrap Lady" finally came through for me. I have FINALLY gotten all of my garments. I just got measured last week for compression stockings so I can have a little normalcy. I will be able to wear them during the day and wear my night garments (the things that look like huge oven mits) at night. They should come in sometime next week! Yay!! I'll tell you those Farrow Wraps that I got are very easy to work with for daytime use, but they are hot as hell. Last week when it reached 80 degrees I thought I was going to implode.
• I am officially done with my physical therapy for my lymphedema!!! I went three months straight. It was a long and tedious process, but my legs are so much better for it. I have my lymphedema under control. All I have to do is follow everything my therapist taught me and keep up with my wrapping and I should be good to go. I still have to be very careful not to get any infections/cuts on my legs or feet. I have to try never to get cellulitis again!
• My husband's hours are still awful. But at least now I get to see him. He works the graveyard shift. I was only getting to see him 2 and a half hours a night. Now I get to see him when he wakes up until he goes to work which is about 6hrs or so.
• I have been trying to be good and started a "lifestyle change" (diets don't work..lol) and I have lost 52 pounds!!!! I still got a ways to go, but let me tell you, I feel a world better. It also has helped my lymphedema. Unfortunately even if I got to my goal weight, I will still have the lymphedema.

That pretty much sums up my life in a few bullet notes. I hope I didn't drop everything on you all at once! I really hope you all have been well. Thank you SO much for being patient with me! I truly adore all of you! I will get to reading and commenting. I have to do a little at a time because I have ALOT of catching up to do!!!

Fitted

YAY! It is Friday! What a long week it has been! I hope everyone has had a lovely week. It has been a rainy last couple of days in NJ with no hopes of drying up until next week I'm afraid.

Yesterday I got fitted for my easier alternative to wrapping myself during the day and the garment I will wear at night. It was a l-o-n-g process because they take precise measurements. The lady actually took pictures of my legs too and traced my foot on a piece of paper. I felt like I was reverting back to kindergarten. LOL!

Anyway, let me show you what the wonderful world of lymphedema can get ya. Below is the Farrow Wrap. On the right side is a silver lining liner that I will wear on each leg to protect the skin. The middle is the footpiece I will wear on each leg. The left side is the wrap I will have for both legs from ankle to knee. Thank God it didn't have to go mid-thigh although could you imagine how sexy that would that have been?? LOL!
Below is the lovely night garment I will be wearing each and every night on both legs. How did they know my favorite color was black?

They are custom fitted which translates into alot of money. Please pray my insurance will cover the bulk of these. They are supposed to come in by the end of next week. I do have to say that it will be much easier than wrapping myself. I will still continue my therapy probably until June. My therapist will do the Michelin Man ™ wrapping on on-therapy days but on my off-days I'll wear the Farrow Wraps. At night during my off-therapy days I will wear the Solaris night garments.

"I'm too sexy for these wraps, so sexy for these wraps, so sexy it hurts." - as inspired by Right Said Fred

A Different Kind of L Word

I learned a few days ago that Lymphedema has it's own awareness ribbon & pin. I was pretty impressed because so many people haven't heard of the disease. I never heard about it until the doctor told me I had it.

So I ordered the pin in the picture on the left. I figured maybe talking about it would spread awareness. They need so much more research for this disease as it is incurable. That word scares the crap out of me. But luckily it is manageable.

Taken from National Lymphedema Network - "Gradually becoming a nationally recognized symbol for lymphedema awareness and the inspirational movement behind it, the transformational butterfly represents the journey of lymphedema over the past 15 years, from complete obscurity to the gradual light of awareness that is beginning to shine on this largely unrecognized and under-treated epidemic."

Speaking of manageable, I wanted to give you all an update on what this past week in therapy proved to me. I suck at wrapping myself. So much so that my therapist asked me to stop wrapping myself and for her to only do it when I go to therapy. See here is the deal. Michelle and Mabelle (Bud's French twins) and I still cannot connect for them to show me their art in flexibility. Gumby is too busy. So what this leaves me with is myself half-assing it. Well the times that I attempted it I caused more harm than good. I actually made fluid move into my foot because I gave myself bad compression. My therapist said to me that no compression is better than bad compression. So, ladies and gentlemen...I am getting fitted for that Farrow Wrap ™ on Thursday. It should only take a few days for them to custom fit them. So I get wrapped on Monday mornings, Wednesday mornings & Thursday evenings which last until Friday evening. So I will be wrapped 4 days a week until I get the Farrow Wrap ™ I will continue therapy and look like the Michelin Man ™ on those days and on my off-therapy days I will don the Farrow Wrap ™ My therapist says in about a month I can get fitted for the custom compression garments for daytime use and the Solaris ™ night garment for nighttime use. That is what I will wear when I'm done with therapy. I can also sustitute and use the Farrow Wrap ™ for either day or nighttime wear. Ahhh, decisions, decisions. What to do. I'm going to be such a fashion plate. Can't wait to feel how hot all this is going to be in the summer. Ugh!

The post below this...I got lazy and put both Saturday 9 AND Sunday Stealing together.

I will leave you with this Laugh of the day:

My hubby sent me this joke...thought I'd share it with you all.

Another new illness to watch out for - Anal Glaucoma

A woman calls her boss one morning and tells him that she is staying home because she is not feeling well.

"What's the matter?", he asks.

"I have a case of anal glaucoma," she says in a weak voice.

"What the hell is anal glaucoma?", he says hastily.

She replies - "I can't see my ass coming into work today."

Exhausted 101

I'm officially exhausted. Between going yesterday to therapy and getting "all wrapped up" and then later on going to not one but two doctors...I'm doing all I can to stay awake. I got up at 4am yesterday to make it in time for therapy. Today I got up at 3:45am so I could unwrap myself, then roll up all the wraps/foam/cotton etc. Then after that I had to shower then re-wrap myself. The whole process takes 2hrs!

Today is a better day than I had the weekend. I feel better about therapy too. My therapist said that my legs are looking healthier and I did not hurt myself by wrapping myself wrong. Thank God. We are opting to wait on that whole Farrow Wrap ™ thing I spoke about too. She gave me something called Tubigrip ™ for in between visits when I don't feel like wrapping. It is a stockinette that has compression on it. She cut it two times the length of my leg so I can put it on, fold it at the ankle and turn the rest inside out so it will then go back up to my knees so I can have double compression. Between that, the wrapping, and the elevating I should be ready to order my compression garments and night garments in a few weeks. How many is few? I still can't get a straight answer.

I'm sorry that my posts have been medical lately. I guess it is because that is what is consuming me lately. It is all I think about. That and my impending job loss come the end of May.

To change the subject....Have any of you seen the Food Network show Chopped? I was watching it the other day and one of the Chefs on there was SO funny. This man named Chef William was allergic to eggplant. So he couldn't taste his recipe and he had a hard time cutting it up because his fingers would swell if he touched "the meat" of the eggplant as he called it. Then it came time to do another course and this one the producers chose grapefruit to be involved in the recipe. Well guess what - Chef William was allergic to grapefruit. The way he said this was hysterical. You had to see the expression on his face to truly appreciate it - "I had swollen, itchy red hands. It was like they were trying to kill me". Again, you had to see it. Did any of you?

Update And Hello

First I would like to thank ALL of you who left such beautiful and encouraging comments about what is going on with me & my lymphedema. I can't tell you what it means to me. From the bottom of my heart, I thank you. ♥

I've been having a real rough time since my last post. My therapist got sick and canceled our Thursday appointment. I have been wrapping myself since then. And I suck at it. For instance...when I took off the wraps that my therapist did, I saw results. My legs looks like a normal size. I couldn't believe the progress. I actually couldn't believe they were my legs! When I took off the wraps I did, my legs looked just like they did before therapy. It is like I have to start from scratch again on Monday. Another week wasted. It felt like I got kicked in the gut.

It is very hard to wrap yourself. I can't even begin to tell you. I really got to talk to Bud's French Twins because I have to learn about flexibility. I have none. I actually pulled my right hamstring trying to wrap myself. My hubby can't do it either. I am seriously considering ordering the FarrowWrap ™ for both of my legs. It is much easier. I think it will do a world of difference for me. Hopefully my insurance will cover it. It is a series of attached compression garments that is applied with Velcro. I'm debating about this and will talk to my therapist on Monday...God willing she is there!

Other than that, I'm doing OK. I'm just trying to get through this as best I can. Hopefully something will give soon & I can have some peace of mind that this will get better. I'm just really trying to work at getting fitted for the compression garments and night garment so I can live a normal life.

Hopefully soon I can post a "brighter" post. I'm just blah right now. I hope you all understand.

A Full Explanation

*warning* - extremely long post
Hello Everyone! I'm back! I'm sorry I've been out of sorts lately. I do have a reason why. I was debating whether to post this or not. Not because I'm ashamed of it or anything, more or less because I don't want to come across as being "woe is me". I will explain.

Remember when I got sick in January with cellulitis in my leg? Well, when I was in the ER, the specialist came in to look at my leg and determined that I had the cellulitis and said that they were going to admit me and give me the IV antibiotics, etc. Then what happened next still baffles me.

Doctor: "Besides your cellulitis, I have a question for you. How are you treating your lymphedema?"

Jodi: "I don't even know what that is?"

Doctor: "Didn't you realize that you are retaining fluid in your calves?"

Jodi: "Well yeah, but I just thought it was fluid retention"

Doctor: "It is not water retention, you have lymphatic fluid in your legs which you will need therapy for"

And so began my life with Bilateral LE (lower extremity) Lymphedema. Apparently I have had it for years and I just didn't know it. I will spare you the details of how I now look back and go..."ahhh, so that is why that happened" moments. What I have is called primary lymphedema. People normally either get it in their legs or their arms. Primary patients develop lymphedema on their own or it can be genetic. There is such a thing called secondary lymphedema. Most people develop that as a result of something, such as say if a woman had breast cancer and had either a breast or lymph nodes removed. That can cause lymphedema...but for a secondary reason.

A real explanation rather than a Jodi explanation of lymphedema ~
Taken from http://www.vascularweb.org/
"Lymphedema occurs when a clear fluid known as lymphatic fluid builds up in the soft tissues of your body, usually in an arm or leg. The lymphatic system consists of lymph vessels and lymph nodes that run through your body. Lymph vessels collect a fluid that is made up of protein, water, fats, and wastes from the cells of the body. Lymph vessels carry this fluid to your lymph nodes. Lymph nodes filter waste materials and foreign products, and then return the fluid to your blood. If your vessels or nodes become damaged or are missing, the lymph fluid cannot move freely through the system. The fluids can then build up and cause swelling, known as lymphedema, in the affected arms or legs."

Basically what happened in the hospital is that the cellulitis aggravated my lymphedema and made it worse. I've been in *alot* of pain for the past two months. So that is why I have been slipping off my blog wagon a little more than usual. Until I started therapy I had to keep my legs elevated as much as possible as not to have the fluid settle in my calves. My problem really was in my shin and ankle area. They hurt the most. If you remember with the cellulitis, my shin was where it started so as you can imagine it did a number on the lymphedema.

I have been on a waiting list for the therapy I need to move this fluid out of my legs. There are not many physical/occupational therapists who specialize in lymphedema. There is a handful in NJ. That is why I had to wait so long. I just started the therapy this past Monday. I go three times a week - Mondays, Wednesdays, and Thursdays. What it involves is this. I get what is called a MLD massage therapy first. MLD is short for manual lymph drainage. It is a very light massage. I would say it is the equivalent as if you were to put lotion on your body, some light pressure. It is from toe to head, in that direction to allow the channels to open up. Then comes the fun part. I am then wrapped up like the Michelin ™ Tire Man - from the foot to the knee on both legs. I have first a stockinette which is like a stretchy ace bandage that goes on first to protect my skin. Then, I have a cotton layer put on. After that is 1/4 inch foam padding which makes this SO incredibly bulky. After that, on each leg I have 4 short stretch bandages. They look like ace bandages but do not have nearly any of the stretch that an ace bandage has. This is what supplies the compression I need to push the fluid up and out of my leg. After that layer is another stockinette to protect all the layers to keep them in place and also to allow them not to get dirty. Where does all the fluid go you ask...to other channels and mostly it is peed out. However, all of this makes one look like the Michelin ™ tire man from the knee down.

Here is what I look like all wrapped up - please note the stockinette is covering everything.

Here is a closer view when I pull down the stockinette. This shows the first stockinette, the foam and then the compression bandange. Sexy isn't it????


Why did I not share all of this before? I don't know. I guess I was just in my own world when I found out. See the thing is, lymphedema has no cure. I will have this the rest of my life. This will require constant maintenance. I will always have to wear something on my calves - day and night. Forever. So yes, I have been depressed about it and putting it "on paper" makes it real. The pain has been really bad for these past two months and I guess it was more or less if I didn't "talk" about it, it wasn't there. I am sorry that I didn't share this with you all sooner. I hope that you all can forgive me.

What happens from here ~ I will be in therapy for about 6 to 9 weeks. I will go three times a week. I will get wrapped there and on my off days I will have to wrap myself. This should prove to be interesting because I will have to take lessons from Bud's French twins on flexibility. I have not wrapped myself yet. I will do so on Saturday. Ugh!

After my therapy is over I will be custom fitted for compression garments. I will have to wear these everyday during the day for the rest of my life. (my legs will look just like that too LOL!)

For evening wear, I will have a choice of either wearing the wraps that I have now which take FOREVER to put on and forever to roll everything up when you take them off. OR...I can opt for the sexy night garment instead. Can you just picture how lovely this will all be in the summer?

Choices, choices!!! I wonder what the lesser of two evils will be. Now the fun part is this. Hopefully my insurance will cover all of this. For custom fitted day garments, they will cost approx $1000-1200 each. I will need two for each leg since I will have to wash them in the evening and allow drying time. So you are talking up to $4800 for daytime wear. The night garments are about the same price but I will only need one each since I would put a lovely stockinette on first to protect the skin. So now we are close to $7000. Oh yes, and they have to be replaced yearly. Lastly, did I mention that my boss is closing the agency on May 31st? But that is a whole other post. Another thing that has added to my depression and stress. I won't get into that now though.

I wanted to post the pictures of my legs though so I didn't scare you guys. They look bigger and bulkier because of all the padding and foam underneath the wrapping and stockinette. Poor Sue looked up lymphedema (yes, she knew but she was waiting on me telling you all) and it scared her what they showed picture wise on the internet. They show people with severe lymphedema...people who don't get it taken care of. My legs *do not* look like that. Thank the good Lord. I feel SO bad for those people because I know how painful my legs are. I can't even imagine how they cope and go through each day. So just in case any of you look lymphedema up, don't worry - those pictures are not me.

I will leave you with a YouTube video of a woman who wraps herself with a multi-layer compression bandage on her one leg so you can see what it is like. She explains lymphedema in detail and shows you how we have to put on the stockinette, the foam, and then the compression short stretch bandages. Please note that in the beginning she wraps her toes. I do not have to wrap mine thank God. You can skip that part and forward to where she puts the foam on so you can see where I begin. But, what she talks about while she is wrapping the toes is very interesting..

If you all made it to the end of this post - YOU ARE AMAZING! Thank you all for your friendship and reading this extremely long post. I hope I explained everything well enough.
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