Emotional roller coaster is an understatement.
Feeling sorry for myself and crying uncontrollably. Feeling angry and frustrated at my situation. Feeling empowered and ready to tackle this head on. All these emotions continuously flood through me. Sometimes all of them in one day.
I couldn't be more relieved that I found a diagnosis to my water retention nightmare. But, let me just tell you, this diagnosis has uncovered a whole new overwhelming feeling of helplessness. At first, things were great, I was seeing results and things were looking good. But now, I'm at a stand still and I am worried about the future.
In March, when the treatment started it was so exciting! I would go to the therapist and she'd do the MLD massage (Manual Lymph Drainage) and then wrap my leg(s). Since, I was so filled up with fluid, we saw results right away. And I felt the difference from the release of pressure right away. I thought I was on top of the world and found the answer to my problems. In some sense I did, but little did I know, it was way more complex than that.
After working with me for awhile, my diagnosis went from Lymphedema, which is water retention to Lipedema, which is a fat storing disease also known as "Painful Fat Disease". Sounds great, right? Well...that title is spot on. "Painful" in all definitions of the word...emotionally and physically. But...it doesn't stop there. I, not only have Lipedema, I have Lymphedema too. Double whammy! What I have is called Lipolymphedema.
Lipedema is a disease that processes fat abnormally and stores it primarily in the legs, hips and butt close to the surface. It creates scar tissue and causes inflammation and could turn into fibrosis. This is how I understand it. It causes what the doctor explains as congestion within the body affecting different functions, and that is how my Lymphedema set in. I have water retention on top of the stored diseased fat. My skin is super sensitive to pressure, I feel arthritic a lot and I bruise extremely easily. And, to top it all off, diet and exercise are not effective in getting rid of it. It is a chronic and progressive disease, so I will continue to build up more diseased fat. If I eat like crap, that will escalate the progression. From what I have read about this disease, it started when I hit puberty, so my poor diet on top of this has lead me to where I am today. IF I would've had a healthy diet, it probably wouldn't be so bad, but it would still be a problem.
All of the methods of treatment that I've done are used as a preventatives to help keep new development of fat and fluid from forming. It doesn't address what's already there.
When I think about that, it depresses me, it infuriates me and it scares me. I am 450 lbs! I know that not all of it is the fault of this disease, but I have gained the weight regardless and to think that it is there to stay, is terrifying. I am getting more and more immobile and weak. Doing basic chores and activities is such a challenge. I have had to resort to riding a scooter to be able to tolerate amusement parks and even grocery shopping. I SWORE I would never be one of those people that rides one of those things because they are too fat to walk. Sorry to be so blunt, but that's how I feel.
Here's what I have gone through so far...
MLD massage and wrapping. This SUCKED! The massage was nice, but the wrapping was uncomfortable, hot and would not stay put. It started to fall down the minute I took the first step. I had to get huge velcro shoes just to be able to walk outside and drive. We would switch off how much we wrapped, sometimes it was to the knee on both legs, sometimes to the thigh on one leg, sometimes a mixture of both. Mike learned how to do all of this and was my in home nurse massaging and rewrapping almost daily. The end result was that it helped my lower legs and slightly above my knees. It did not address my upper thighs, hips or butt. And, to add insult to injury, the wrapping introduced two new problems because of the fact that I walked funny when I had them on. There was a spot in my upper left thigh that would twinge and feel like a pinch nerve that became a constant nuisance. It hurt when I walked, stood a certain way or lifted anything. And , I pulled my right achilles tendon. Which made it even harder to move around.
After getting discharged from the therapist, we started using the massaging machine. This is just another form of massage to stimulate the lymphatic system. This process was much more involved and time consuming. Mike didn't have to massage me anymore, but he had to hook me up to this machine twice a day and rewrap me twice a day. Needless to say our lives and plans revolved around this new routine. The guilt I felt and feel because of this problem I have is unbearable at times. I've tried to stay positive, but the results I've seen and felt are very disappointing to say the least even after doing everything we're supposed to. In fact, the machine has caused more discomfort than relief. Because the wraps can only go up so far, my hips and butt get NO compression. And, those are my worst areas of congestion. So, it feels as though the machine and wraps just push up the fluid to that area making it feel even more full of pressure, heavy and hard to move.
One thing that I was hoping would be my saving grace to really get control of the constant fluctuation of fluid was the custom compression garment we had made for me to wear everyday. It was $1100 for one pair (two pair were ordered by mistake making us think it was $2200 for one pair). My therapist misunderstood my direction to call me with a price before ordering, so we had to suck it up and pay. I was dreading and excited for this garment to arrive. When they arrived, I pulled them out of the bag and opened them up and about fell over in shock by how small and short they looked. I thought for sure they were made wrong. But...I knew they were designed to be tight in order to have the compression, so we attempted to put them on. The first attempt was hilarious. Mike was using all his strength and I was bending and squatting any way I could to try to get this sucker up. We finally gave up and put them aside. Mike YouTube'd different videos with tutorials on how to put them on and what kinds of tools are out there to help. We drove an hour away to a store that carried the specific tools recommended to help him help me put these support hose on. The next day we tried again with not much progress from the day before. The crotch part only got up as high as mid-thigh and the material around my ankle was very painful. Remember I have the "Painful Fat Disease" as well as water retention, so the pressure of these hose is sometimes too painful to tolerate. I wore them for awhile just to get some compression, but once I had to go to the bathroom, we had to do the whole process again. I couldn't just pull them up and down because the garment turned into a tourniquet around my leg when I pulled them down. It became more work and headache than helpful. But we still tried several more times in hopes of stretching it enough to make it easier. No such luck. I called the lady that I got them from and she contacted the rep for the manufacturer. We set up a meeting to remeasure me and see if there was a mistake. Sure enough, there were several measurements off, most noticeable being the length of my legs. Which would explain the crotch area only reaching my mid-thigh. The other measurements change throughout the day on a normal basis due to weather and activity, so those weren't a big deal, but still adjusted. The hose were then reordered and I have received them. My legs got very full and tender from our trip in June, so I've had to give them time to slim down by doing the wraps a little. But, that has shown little improvement. In fact, it flared up my aggravated thigh muscle and ankle pain again, so I had to pick the lesser of two evils. Right now, I am doing none of the therapies to help with the retention. Some days are fine and some days are miserable. It is what it is.
There is one method that has always been a possibility, but not one that I wanted to jump on board with immediately. I wanted to try all these other methods first. And that method is... Lipedema Liposuction. This is surgery that will address the diseased fat and suck it out in order to bring my body back to a stage that isn't so advanced and will help me regain mobility, help me lose weight and then be in a better place to maintain and slow down progression. It will never be cured and I will have to really be mindful of how I take care of myself from now on. But, it will help me get a better handle on the disease.
Since this disease isn't diagnosed often because it is seen as obesity only, there are only a few doctors that are specialized in this unique type of liposuction. One is in California and 2 are in St. Louis. Mike, my mom and I have already had a phone consult with the one in California. He has 20 years experience and I have read a lot great reviews about him and watched several videos. I have a good feeling about this doctor. I've tried to reach out to the St. Louis doctor with very little success (not impressed with the run around I've been given with their office). The third doctor didn't impress me at all in any way.
During the consult with the California doctor, he addressed the treatment plan he has for me, in addition to further explanation about the disease and some details about himself. It was a very informative consult and he was very personable. Before our consult, I had to send him pictures and fill out a questionnaire so he could see what he'd be dealing with. He said I was Stage 4 in my hips and butt, an advanced Stage 3 in my thighs and knees and a normal Stage 3 in my lower legs and upper arms. His treatments plan would be to do 3 surgeries a month apart from each other. The first would be my hips/butt, the second would be my calves/ankles/upper arms and the third would be my knees/thighs. He uses three/four types of tools, one specifically designed to address the diseased fat. It shoots water into the problemed areas to break it up then it's sucked out. The other tools are to help with the "blending". I will not be under general anesthesia, it will be local anesthesia. And because of my other medical problems, an anesthesiologist will be monitoring me very closely and I'll be under greater sedation. The doctor wants his patients alert so he can position them better for better results. I will also be monitored overnight after each surgery and have follow up visits for 5 days after.
We will be traveling back and forth each time and staying in California a week at a time. It's a scary decision to do this, but I am so tired of dealing with this and feeling more and more dependent on everyone. I want my mobility back! I know this isn't the fix all solution and I have a lot of work to do to not let it get so out of control again. But, that's ok, I can handle that.
We will be scheduling my first surgery soon. We're looking at October to get the process started. I am extremely nervous to do this, but I feel it's the best method to get control of my body again.
