As I said...

... things can change so quickly. I lost my love to manic depression. Runs in his family. He has turned against me and wants nothing to do with me. Outlooks are bleak and I don't think he will get help and come back to me. It feels so unreal, absurd and confusing.
The jobsituation has changed too. I still have my job but a new CEO has been brought in and my working conditions and opportunities for the future are now much different. My co-worker is not being nice to me.

Life goes up and down. I really did cherish what I had when I had it. At least I got that one year with my love and I am still thankful that I got that job after all those months without.

It is not all bad news though. In April this year I bought a lovely little allotment on the outskirts of Copenhagen. It is more like a small summerhouse really, with electricity, running water, toilet etc. There is a bedroom and kitchen so many times during the summer I have stayed there for some days. My sanctuary. A place of peace and quiet in an increasingly mad world. As I live in a flat on the 3rd floor it is heavenly to be able to go there and step out on my own lawn and sit with my coffee, listening to the silence and the birds. Being able to wear sandals without worrying about anyone seing the compression stocking and the toecap. I am already looking forward to spring and summer so I can go there again. It is six months away though.

I am sorry it's been so long. I haven't had so much to write about, at least not reg. Lymphedema. My leg is the same, big. Earlier this year I got two new JoviPaks to use at night. They do a good job and my leg is soft when I wake in the morning but it hasn't really made my leg any smaller. Oh well, at least it keeps the tissue from growing hard etc. I had a MLD a few weeks ago and my therapist was impressed, she thought my leg looked and felt very well managed. I am seeing my fitter soon, maybe he has some new ideas reg. nightgarment.

Farrow Wrap

I recently got a Farrow Wrap to use on the lower leg over my Jovipak nightgarment as I feel the nightgarment itself hasn't done all that much. I know that many of you know about the Farrow Wrap but for those who don't it is a kind of bandage made of a number of strips assembled in the middle, closed with Velcro. It looks like this:

In the time just after I was diagnosed nearly four (OMG!!!) years ago I had a similar product, it was from another manufacturer and called CircAid. So now I've got this one and I've used it for a few nights. It is not bad at all. There is definitely a difference to see upon taking the bandage off in the morning, the swelling is somewhat less. The Farrow Wrap I have covers the lower leg only so the knee and upper leg has no extra compression. For a couple of nights I applied a roll of bandage on the knee before putting on the Farrow Wrap and it worked, the lower leg and knee both looked real nice in the morning. However, my foot went numb during the night and I had to take off the Farrow Wrap and the roll on the knee. Perhaps I tightened the FW too much. Perhaps it was because I don't have enough compression on my foot compared to the leg.

Applying my nightgear is a little cumbersome, I feel. It is not at all comparable to a full wrap though but no longer a "slip-on" solution either. First I put some pads in strategic places to put extra pressure on the forefoot and bones on the side of the ankle joint, then the Jovipak, then the "jacket" that comes with the Jovipak, next a roll of bandages on the knee and finally the new Farrow Wrap. It takes maybe five minutes whereas a full wrap takes me about twenty minutes or so, so it is still an improvement, timewise.

On the picture below I have it all on. I am so incredibly sensitive on the bones on the side of the forefoot, that's why the "jacket" is not covering the foot, my fitter have adjusted it. It is not the greatest in relation to most pressure must be on the foot, so I put some pads on the forefoot, under the Jovipak, it works somewhat. I use my Easy-Slide to put on the Jovipak with the pads inside. I have a post about my pads here.

I don't think I have posted anything about the new nightgarment I got, the second Jovipak. The new one is longer and covers the hip, which is what I need now. The last six months or so I have had a bulge just over the top of the compression stocking and the new garment somewhat addresses this. It looks like this:

Last Friday I went to an awesome concert with a great Swedish band, Bo Kaspers Orkester. They are very popular overhere. I love their laid back, jazzy tune and curious lyrics. If you want, you can listen to a couple of their songs here and here and here. They sing only in Swedish which would make no sense to most readers here, but I guess you can still enjoy the music. Swedish is related my language but I don't understand everything either. Hutch, do you know and like them?

Done!

I have just finished my big annual session of MLD and wrapping before having my leg measured for new compression stockings. It's been going fine and my leg looks good compared to what it was. I feel, and I had hoped, it could have looked even better, especially around the knee but my therapist says it is most important with the calf. She also said that some of the extra fluid has converted into fatty tissue. No way back. This makes me sad. I wish I had been more aware of just how important it is to look after ones leg and constantly taking care of it. Not that I haven't – I simply can't do without my stockings so with them I don't have a choice but I wish I had gotten a nightgarment sooner or bandaged my leg more often and also seen the therapist more frequently. I have always done what she told me though. Anyway, she says that over time we might be able to get the leg down a little more but nothing is for certain. She was quite happy with the result after 8-10 days of MLD and wrapping. I guess it does like quite good compared. I have some shape around the knee now and my ankle looks good too. While waiting for the new stocking I have been wrapped on and off at the therapist and wrapped myself every night to keep it down till it arrives.
We've been using the Mobiderm bandage that I got earlier this year, it's been real good. It does a great job of softening the tissue and thereby making it more mobile.
I am awaiting a new nightgarment. A JoviPak again but this one will go up around the hip whereas the old one stopped about where my thigh-high stocking ends too. I had developed a little bump/extra swelling where the garments ends and my therapist was a little freaked out by that. She worked intensively on it and brought it under control again. Having wrapped my leg she would some days add an extra roll that would go around my belly and the hip, that worked quite well.

I don't really feel the nightgarment has made any difference. It might help keep the tissue soft but when I measured my leg just before the big session it was the same as before I started using it. My fitter will make some adjustments to the new one and says that if this doesn't change anything he might look into a Reid sleeve that I have been recommended. It is not on the Danish market but he can order it from America or whereever it comes from.

After the wrapping session I've been feeling the right side of my groin when training for my big walk. Not good. My therapist says it's irritated after the bandaging and the dodgy walking. That's another thing I've been thinking about reg. being wrapped for a long time, it can't be good for the rest of the body to be bandaged for more than a few weeks as one compensates for the stiff leg and uses the body in a way that might not be all that great. What do you think?
I hope my groin will recover very soon, just over a week till take-off now. I am going to take it easy this week, no training. I have left my boots at the shoemaker anyway to have the one for the Lymphedema foot made a little wider. Usually it feels fine but there are days when it would be good to have a little tiny bit wider, and I might also wear another sock over the compression stocking, there's gotta be room for that too.

More compression

Monday I went to see my fitter about my Jovipak nightgarment. I wanted to discuss the fact that it's not really making much difference. He was concerned. It is a new product overhere and he had not had this problem before. I don't think he has sold all that many of them yet. He would contact Jovipak in America right away and see what they thought, I'm still waiting for news from him. He said they might take it in a little and see if that would help. I mentioned the Mobiderm nightgarment to him, a lighter garment with little foam squares that I have been thinking about for a while, but that dream ended when he said I would have to do a full wrap over it to get anywhere.
Just to check, he measured my leg and then got a concerned look on his face. The measurements had gone up quite a bit on my lower leg since I got this stocking and the nightgarment. The stocking can't hold things back. I might have to get a knee high, grade 1 to wear when at work where I sit a lot. Darn.

I also mentioned my not-so-good-anymore foot to him and showed him. He said it doesn't have to be Lymphedema but could be venous insuffiency. He said that it is not all that common to see Primary lymphers getting it in both legs. I don't know about that, as I think there are many out there with both legs affected. Perhaps most of them have it from Birth. I'm thinking "who cares if it is venous insuffiency or Lymphedema if I still have to wear compression stockings", but apparently with venous insuffiencency one needs less compression than with Lymphedema. Whatever. Anyway, he told me to cut an old compression stocking above the ankle and use it at night for a while to see if that will do it. I haven't gotten around to do that just yet but hopefully I will manage this weekend.

Update on my nightgarment

I have had my Jovipak nightgarment nearly three months now and I've been wearing it every night except when washing it. It takes 36 hours or so to dry.
There is not much difference to detect. The tissue in my calf is a little softer but the size has not gone down. I think the garment is too loose. I have been wearing it with 4-5 rolls of short stretch bandages over it to add more compression but even that doesn't seem to make any difference.
I have made an appointment with my fitter next week to see what he says. He sells another garment too, a Mobiderm night boot. Perhaps that will be better for me. The Jovipak is very padded and can be a little hot during the night, I think the Mobiderm is lighter.

For a while I've been wanting to share this song with you. Check it out. It's from last years season of a Danish show similar to Idol. The way this version is performed really brings out the beauty of the lyrics. I never realized how beautyful this song really was before I heard this. It is a cover of another alternative version, but quite different. Almost hauting, I feel. Anyway, I hope you like it. There is some talking first, the song starts at 0:40.

Sensitivity

My new Jovipak nightgarment has so far not been the success I was hoping it would. It is still early days though. The last two nights I have had to take it off during the night as it was causing pain on my sensitive spots. I have had the same problem many times when wrapping even though I try to protect the sensitive bones with little rings of foam around it.
The garment hasn't produced any results as to less swelling either. Last night I wrapped three rolls of Comprilan short stretch bandages over it, to mid thight, but as I had to take it off and I could not be asked to turn the lights on and check my leg I don't know if it was any good. I might try and get some better protectors soon. I feel discouraged as I had high hopes for this type of garment, so easy to slip on and go to sleep. Slip and sleep. Not.

Nightgarment

After weeks of waiting, my Jovipak slip-on nightgarment finally arrived the day before Christmas. It has been allright so far, not too tight – actually not tight at all – not too hot and not too stiff. Much less stiff than bandages. It's a little dificult to put on but I guess I will find my routines eventually. I haven't noticed any difference yet but I've only used it a couple of times as I have been away at my parents over Christmas where I didn't bring it. It is quite big and takes up a lot of room. I'm thinking about going on a trip next spring and I am wondering if it will fit in my backpack.
The garment supposively works by softening and massaging the tissue so the compression stocking can do its job more effeciently, providing compression and leading the now mobile fluid away. I have heard good things about the Jovipak so I am excited about getting started properly. As sad as that sounds – looking forward to sleep with a ugly, very padded boot. I guess you know what I mean – I am looking forward to my leg getting better.
It comes with an extra sort of stocking to put on top of the boot itself to create more pressure. I might try that soon.

It's quite big.

JoviPak nightgarment

Yesterday I went to the prostegist to talk about a nightgarment. They had the JoviPak, and that's the one I am going to apply for. I had it wrong about putting new compression stockings on hold until I got the nightgarment and letting that do it's thing, I actually have to be wrapped and get the edema down as much as possible before being measured for the JoviPak nightgarment. I will now make appointments with my lymphedema therapist about a big wrapping session, leading to measuring for stockings and nightgarment. I also have to go see my GP to get her to file for the nightgarment at the healthservice. Apparently the JoviPak nightgarment is well known and used in Norway.
What's the right word for the shop that makes compression garments, specialized footwear etc. – is it truss, prostegist or something else?

Yesterday was a good day for my country. The political situation have changed to the better and a decade of reversed Robin Hood has ended. New and better times are ahead, I feel.

I've ordered these stylish palazzo trousers from asos.com. They were reduced from 40 to 12 GBP, but there was only size 12 left and as I believe that is my size I thought I'd better get them before they are gone. Good price. And great, dusty colour. I am sure they will look good with some sort of black top. Looking forward to recieving them, they are already on their way. Asos has free worldwide shipping.

Nightgarment

Having beaten around the bush for way too long I have now decided it is time to get a nightgarment. I have postponed it because I feel akward enough as it is with compression stockings, pumping, bandages and what have you, and because the time when I am in my bed with nothing on the leg is a haven. A time where I can feel almost as before Lymphedema. Almost normal.
Nevertheless, there is no doubts a nightgarment will do my leg good, and so it is foolish not to do it.

I have made an appointment next month with the prosthetist where I also get my compression stockings from, they sell nightgarments by Jovipak and Mobiderm. I am going to have a chat with him about what might be good for me, and perhaps get a testgarment to try at home. I am very interested in learning about others experiences with nightgarments, both the above mentioned and other brands.  

Any readers wearing nightgarments – if so, which one?
Is it effective? 
Is it hot at night? 
Is it easy put on and take off?
How is the mobility, if any?

I just came across a tip about putting the garment in a plastic bag in the refrigerator during the day, leaving it nice and cool for the night. Supposively it "keeps its cool" pretty good through the night. Clever.