Lipedema Journey!

Follow my travels & changes as I try to correct a condition I have called Lipedema.

[lipedema]

This is a photo I posted on IG this last Saturday 3/18.  My lower legs are 3.5 and top legs are 1.5 months post op.

-You can see I have a lot of darkness floating around on the outer and inner thigh. Swelling still comes and goes. I got my period on March 11th (a week before this photo) and my legs were absolutely enormous. - I stopped wearing compression at night! -I wore LOOSE socks on Monday with regular leggings and had serious indentations on my legs. -My blood pressure is 90/50 as of Monday. Pretty damn low! -The pain in my thighs is finally decreasing, and I'm walking totally normal and happily except for the issues with my blood pressure tiring me out. - at 5'9", I was 170 lb before OPs December 7th, now after all 3 OPs I'm floating around 155 lb

***Oh, and yesterday, I joined a gym with a pool and I'm so excited!

[lipedema]

Surgery No. 2, day 17.

So the pattern on my arm is from my Bioflect arm compression, but the long and deep dips in my arm are from surgery. I was alarmed, but was told this would fade over time. Yes. Surgery is serious. 

[lipedema]

Surgery No. 1 & 2 update

Happy New Year!!! I think with healing, traveling, and the holidays, I’ve been all over the place so my updates are on the light side. I am trying to keep my instagram account alive with updates though! The “insta” part is accurate and easier to manage. 

Surgery no. 1, day 27. I think my legs are going to take a lot of time, due to gravity and movement to get over swell, I DO however see so much change already. Especially in the “pillows” by the inside of the knees, which really make my thighs look more shapely now that they're not big and column like!

Surgery no. 2, day 15. I am already really happy with the result of my arms!

[lipedema]

Surgery No 1, Day 22 & 23

Day 23: Lower leg swell is getting better.

Day 22: Today, I got to wear my kicks instead of my crocs!

[lipedema]

Surgery No. 2, Day 2-4

Day 4: very swollen and bruised!

Day 2: extreme hand swell

[lipedema]

Surgery No. 2

So, MAYBE I am crazy. But I got my arms done yesterday, December 19th, 2016. Pretty close proximity, but, in knowing that my job is in the last quarter of the year and things tend to slow down, in addition to the Christmas break - I could afford to take more time off now than later. There was the concern that I wouldn’t be up for it, and that my foot may be too swollen for the anesthesia! But it was done. And it was SO MUCH easier than my lower legs, in terms of pain during and after surgery, I also didn’t feel faint/dizzy at all. 2 liters were removed. 

[lipedema]

I out-did myself :(

Surgery 1, Day 12. I was feeling okay, till I got home this evening. 

We were excited to have a car and go exploring. We headed to Zollverein Coal Mine Industrial Complex, followed by the Christmas markets in Essen. I walked over 7 miles! 

At some point in the markets, I couldn’t stand anymore, everything began to hurt. Finally, I got my way and headed home. When I got home, the pain worsened, my knees felt like I had flown off a motorcycle again (happened to me 2 years ago), and I cried myself to sleep. Maybe staying out on my feet ALL day wasn’t the best idea.

[lipedema]

Surgery 1, Day 12.

Bruising is getting better! Swelling, not so much. I have been walking far more than resting. I think the NY’er in me doesn’t know how to sit still.

[lipedema]

Traveling in small movements

Surgery 1, day 11.

Decided to rent a car today and drive around with my girlfriend that has come to take care of me since my husband had to leave after a week. 

We took the train from Mülheim to Cologne (since we are leaving from there at the end of the week) to pick up a car. We drove through there, Bonn, popped over to this tiny town called Zons that was pretty quaint and charming, then swooped back up to check out the light show at Landschaftspark Duisburg-Nord in the damp rain, then home! 

Time to rest up.

[lipedema]

Surgery #1, end of day 4.

This photo is from the very end of day 4.

Today started, I ate, hydrated, medicated, got undressed, showered, got dressed. Almost took 2 hours.

I walked around the forum mall in Mülheim before hopping on the train to meet a cousin and her family in Düsseldorf. My husband and my friend from London were there to support my movements but I was very mobile today and even my balance was better. I walked a lot and didn’t mind. There’s still stiffness in my legs and weird numbness and some clicking. I am still, like a faucet, leaking from an incision on my right ankle that flooded my flat knit, a sock, and the padding in my shoe.

I taped a maxi pad to it for bed, inspired by my support group.

I noticed a bruise forming near my toes in the morning. Heels at started the night before (3rd night). At the end of the first long day of walking, my feet are turning black, and my legs are enormously swollen.

I love walking so I will have to keep in mind to put my feet up more often. I do find it nice to wiggle my ankles and flex my toes, which I started trying to do immediately whenever I was elevated.

Day 5 (today), I will be moving flats which I’m happy about, I didn’t love the 2nd one we tried for the weekend so it’s back to the first but I will try to get cozy and elevated more often between walks than yesterday, I also have MLD scheduled for Monday, I may go to the massage/therapy clinic and try to use the stationary bike, rather than have the man come to me.

[lipedema]

iPhone steps may not be the most accurate. We got into Mülheim after many many hours of traveling on December 4, and my surgery was December 7. But you can get an idea of progress with steps and movement pre and post op!

[lipedema]

Surgery #1, Day 2 summary

My surgery with Dr. Heck for lower legs was yesterday. Not sure what happened to my anesthesiologist but at some point she changed over to an anesthesia nurse. I guess it worked out because the he was very attentive, and tried to calm me down through my pain!

During the surgery, I felt quite a bit more than I had anticipated. I had slept at the beginning but then being woken up through the rest was difficult.

The pain immediately after the surgery, when I got to bed, was crushing. I cried myself to sleep and woke up in an hour or so with more bearable pain.

I got to get up to use the bathroom at around 3 hrs post op. Got lightheaded on my way out of the bathroom. A few hours later I got up to go again and got so bad I could only see light and color and went very white. Had to get to bed and lay down immediately.

Soon after I was given food, antibiotics, and a shot to the stomach to prevent thrombosis. Both of which will last about 5 days. Two antibiotics per day. One shot every evening.

This morning I was up at 6, given food and coffee so I could take my antibiotic. I threw the covers off of my legs to air out the awful stench! P.U.! Nurse Lisa came to put another layer of bandages over my bloodied ones. I can not cut them off till tomorrow. I can't wait!!! I smell terrible from the thighs down!

I have been stumbling around the apartment I rented in my maxi pad lined crocs. I did get lightheaded again after I laid down for a bit and got up to use the bathroom. Now I am sitting up, drinking and eating and I feel a bit better.

I pray for a fast recovery. But really for a shower most of all!

[lipedema]

Surgery #1, day 1. Images are from 6:00pm, 1:00am, 1:30am, after my 12:30pm surgery. Complete massacre! Lots of leaking on the first day.

[lipedema]

The pain is still present but my lightheadness seems to have faded a bit! My first two trips to the bathroom were rough. Especially the second one. I turned bright white (I'm brown so it takes a lot to turn into a ghost!) and had to get to the bed and lay back down. There are antibiotics given to you as well as 5 injections for anti thrombosis. Thank goodness my husband and my friends will be around for the shot. My last trip to the bathroom at the clinic was better at about 1:30 am. Still dizzy. This morning I woke up early at the clinic and had some food with my antibiotic. When my husband came he helped me stand to get dressed. I grabbed my hat from him and said "I can put in my own hat!" As he turned around and I tried I went "whoops" and lost my balance back onto the bed 😂. I have left the clinic and back to the flat. My husband has made a few stations for me to hang out in, pictured is my couch station. I have a fairly good sense of smell. Unfortunately I smell awful. Like a dirty toilet from the thighs down. I look forward to cutting the bandages and layers of fluid and blood away tomorrow for a shower. 🚽✂️️

[lipedema]

Here you are. Pre op and post op photos. I have been out of op for almost 6 hours. I was nervous because I had no idea of the pain I would feel. Immediately after surgery it was unbearable for me. It felt as if I was between two cars in a crash. But after a 1 hr long nap I woke up better. Ready to get up to the bathroom. Made it all the way there safely! Got pale and light headed on the way out of the bathroom. My new legs are leaking heavily. And the pain has grown to an annoying discomfort. I took a small nap during surgery and woke up in tears. I'm not too tough a cookie but I survived! I just had dinner with my antibiotic pill as well as an injection in the tummy that should prevent thrombosis. I tried to go to the bathroom again, I made it, but barely made it out. The light headed business is absolutely no joke.

[lipedema]

Yesterday I went for my consult at LipoClinic. Nervous as all hell, I messed up my paper work a few times 😂. Consult went well, I was examined, photographed, weighed and measured! Also, meeting Dr. Heck and nurse Lisa in person soothed a lot of my worry. The whole team at the clinic seems so lovely. I'm excited for the beginning of a new life, maybe with more flexibility, strength and cuter pants! My husband thinks my research and wait has been well worth it, after meeting everyone. Now that the surgery is off the worry table pretty much, I'm a little concerned about recovery! 😬

[lipedema]

Today is the day my husband and I fly to Germany! I've got my flat knit compression on as well as my sockwells. I'm incredibly nervous, not to fly, that's the easy bit. I'm nervous about surgery, nervous about my life long insecurity turned medical condition changing my appearance, quality of life, and maybe my mental image.