Carrie's Lipo-Lymphedema Fight

For: Carrie Baxter
Sacramento, CA
Organizer: Carrie Baxter
Carrie's Lipo-Lymphedema Fight (Carrie Baxter)
$1,885
of $15,000 goal.
Raised by 28 donors
12% Complete

The Story

Several different friends have been wanting to set up a page to help me and I've been refusing for about a year now. But I realize, I do need help. So I thought I should be the one to step up and admit I need the help.  Here is my story...My story. Ok. So, what do I share 'briefly' about my story? I'm long-winded and still making sense of what's happening with me but want to be able to explain it to others too. This is the most condensed version... 

For the last 25 years I've been in a fight with an invisible disease that has taken from me without me even knowing that 'it' was the cause. Every doctor I saw since I was a teenager said the same: 'you need to lose weight'. But never solved any of my complaints and could never find anything wrong with me. And never had anything to say about why I was unsuccessful. I allowed everyone, including myself, to blame me for my growing lower body, despite any evidence I was causing the condition. I won't go into how I've been mistreated, or stared at, or ignored, as I want to stick to the important info that helps me move forward! 

After years of unexplained illnesses, some serious and mysterious, coupled with not being able to lose weight, I just resolved that my immune system was worthless and I had no willpower. With rest, season changes and time I seemed to get a little better before the next thing hit me.

After multiple bouts of pneumonia, in March 2016 I developed a skin infection called cellulitis that was unexplainable and unhealable. It ulcerated and caused extreme health issues including staph infections and multiple hospitalizations that lasted through all of 2016. I had to see several specialists in attempt to figure out what was happening. 

In October 2016, I was FINALLY diagnosed with a chronic illness that made perfect sense! One of four vascular specialists I saw recognized two primary health issues that went undiagnosed for over twenty years and compromised my immune system into a state of serious concern. I have a condition called Lipo-lymphedema. This illness is an abnormal growth of fat cells in which the body cannot lose the fat by diet and/or exercise. The fat keeps growing and absorbing fluid from the body. It grows and does not shrink, leaving a very disproportionate body. I have Stage IV, Type IV. That means, it's been growing and growing and has even spread to some of my upper body/arms. In addition to the abnormal fat, I also have extreme swelling due to a lymphatic drainage issue and have an incredible amount of free flowing fluid in my body that should be eliminated through the lymphatic process. Coupled, they leave me exhausted, heavy, less mobile, ill, full of toxins, swollen, at risk for serious infection, and needing medical intervention to resolve. 

If you know me, you know I am the helper,  I do NOT like to ask for help or put anyone 'out'. However, in being honest with myself, I am out of moves. I have been working hard on putting into practice letting others (who feel moved to help) be part of my victory story. I am committed to gettting my conditions under control, getting necessary treatments to fight the conditions, and ultimately fighting for others!

Biggest expenses:

Currently, I am driving 1.5 hours each way to therapy, incurring costs from therapy co-pays ($68 per session- 2-3x week) and gas.

Medications: I have to take several now and pay on average $100-$200 month. 

Wraps & compression garments are necessary to keep the swelling down as well as to manage limb usage. My portion of cost for reusable wraps is: $950. 

Specialists: I need multiple specialists and treatments by providers who are out of the area and not all covered under insurance. This will include a combination of travel (flight or gas), hotel, meals, and specialist costs. Each trip average: $400-$1000. Number of trips isn't confirmed but is expected to be between 5-10 in 2017 (depending on surgeons schedule for procedures).  

Surgery. I will need between 3-7 surgeries to remove abnormal fat and excess fluid in my body that must be performed by special procedure. Only a handful of specialists can perform this. Estimated costs are coming in now and are expected to be over $50k. Pre-op specialists visits need to happen first. And I'll need accommodations in the area for recovery after each procedure. 

Life. So far, my short term disability claim and savings (now depleted) has covered my living expenses but it's nearing an end and I'm still unable to return to work. So, there is a huge concern starting to build. 

You can can read more about my journey, what each condition is, plus more about what any donations will cover on my blog: www.carrieslipedemalife.com.  

Prayers are appreciated as I deal with these conditions plaguing me and so many others are appreciated!!

❤️
CB

Fundraiser Updates

Posted on June 20, 2017

Posted on June 20, 2017

The heat has arrived!! I can tell by the temperature noted in my car, on the news, and via the running of the air-conditioner but mostly I can confirm the weather has arrived because the swelling in my legs and arms and throat has been out of control for the last couple of days. I have been doing everything we can to sit back and trust that all will work out. That I will find the money for surgery, I will be rid of all of the issues plaguing me that are keeping me from being released to go back to work, and be able to take care of my normal expenses. While I completely trust, I forgot one thing - sometimes we really do have to be vulnerable and lay our cards on the table.

It's hard to ask for money. Especially since I'm not dying or already deceased. It's hard to sit back and see the different types of campaigns that get funded faster than others. Faster than mine. It's hard not to have pity party's about it and think about the help coming in. I've been sitting back and assuming it just isn't meant to be. I took the hope away from myself that something will happen to bring about my help. I need to be open- I need to believe. I need to trust I'm worthy to be helped!!!

I want to make it clear right now that I desperately do need surgery; that I desperately do need help. That I desperately need my story shared so that others can help me too. It took me all this time to realize that it's not just the campaigns that express extreme heartbreak that cause people to react, but the stories that are real and genuine and change lives that get attention. My story is definitely life-changing. I have an illness that causes me to be much larger then I should be. It causes my fat to grow and grow without any reaction or response to diet or exercise. I've spent more than 20 years trying to get a handle on it before ever even knowing what 'it' was. Lipo-lymphedema. Cruelest thing to ever happen to me.

Now that I know, I know what I need. I need to have surgery. My surgeries do cost approximately $65,000 in total. However, they are individually priced because I need so many. So today I am letting others know that I need $7,000 to get scheduled for my first surgery. It would help me begin to free part of my body from this debilitating disease that is claiming my mobility right now! Without it... I don't even want to think about where I could be in one year without it.

I also currently have bills (monthly, medical, accumulated expenses since disability ran out) that I can't pay totaling about $5200.

I can't get released to go back to work because of the likelihood I'll contract a severe infection because of my conditions- I also have extreme deficiencies in immunity cells that can't be fixed due to a blood disorder that also can't be fixed!

I need prayer. I need healing. I need financial blessings.


I know God is good and has already commissioned those who are to help me. I believe He is going to open the doors, I want to be open to receive and accept blessings and keep thanking God for his provision and love! 

thank you!!

❤️
CB

Posted on June 3, 2017

UpdateImage

Posted on June 3, 2017

While I wouldn't characterize myself as a worrier, I am very type-A in thinking through the endless possible outcomes of a situation. I have worked hard to keep in faith that God knows exactly what I'm going through and has every door ready to open- in His timing. Some days, it's easier to trust than others. Some days I don't talk to anyone, my phone stays in my room on silent and I hang with my remote control and my friends (including Jesus) don't hear from me. Some days, all I can do is talk to God about those endless possibilities.

It was easier to believe in the beginning that I was going to be ok. I mean, I've been sick before, I've had many infections since 1999 when I moved to CA. Sinus, bronchial, pneumonia, sepsis, kidney, UTI, phlebitis, cellulitis, staph, strep, clostridium difficile...to name a few ;) I've also had migraines, been so swollen none of my pants would go on my legs and so sick to my stomach I couldn't move. I've done my best to listen to my body and rest as needed. But no one has ever found out what is 'wrong' with me underneath it all.

In December 2015 I thought I figured it out! Allergies. Extreme food and environmental allergies causing systemic inflammation and infection as the chronic sinusitis was not in check. I tested positive for 85 of 110 things tested for. That was until March 2016 when my leg became the focus of my troubles. Cellulitis. Out of nowhere. Overnight. Ulceration. Deeper infection (staph). Wound care. Six months of hard antibiotics. One month of runaround from multiple specialists. Re-infections for 3+ more months.

The right doctor! A vascular surgeon recognizes the swelling symptoms. He cites lymphedema as my issue.

Research. Research. Research.

More specialists.

Diagnoses: Lymphedema, Lipedema, Lymphocytopenia, Venous Reflux.

Treatment plan: surgery to remove Lipedema which should relieve pressure on lymph and blood vessels.

You'd think that would be enough to deal with but then add in being unable to go to work since my second hospitalization (May 2016) and it stings. I was so grateful that I was able to receive short term disability - it kept the worrying down. I was able to, even though it was only partial salary, I was able to keep up.

This continued to help me trust.

In April of this year, I had a day where everything hit me- I had new infections and medical issues that required more specialists. Now, surgery wasn't my only necessity. I had just one more month of disability payments (no extension options, etc). My savings dwindled to nothing and I really felt the pressure. I started seeing rainbows and was reminded that God is good and always was and always will be my provider.

In May, people continued to have pity on me and sympathize with my story and pray for my circumstances.

I got sicker. I came down with a major intestinal infection.

I got even sicker. I came down with two infections on top of the c.diff) infections.

My disability payments stopped.

My doctor won't release me to go back to work (I can't blame him, I have a contagious infection and can barely stand five minutes at a time).

Yet I keep trying to lead with faith and trust that the God who created me KNOWS. He cares. He has a plan for my life.

I ask for deliverance daily. I pray for open doors. I actively seek direction so I can get well.

I keep thinking of all the ways God 'could' deliver me. I dream that there's a plan in action that I can't even conceive! I am hopeful. I am trusting. I am waiting.

In the meantime, I work daily to lay it down at the foot of the cross. Today, all I can to take steps I think will open the next door.
I want to be like the birds who don't even question. Who don't have to wonder. I can't help but wonder though if birds had to deal in currency, I wonder if they'd still fly about with no cares.

Tonight, I'm trying not to worry about where I'll sleep after next month when I'll have to move out of my house (with my grumpy cat) and how I will 'keep up' now that incoming funds have ceased.

Next week I have some major testing to determine from what some of the intestinal issues are stemming. I'm hopeful I'll get more answers.
I want to be like Job and keep faithful, knowing there are wars being fought that I can't see. That my life is in good hands. I have had a few moments where I've cried out that it was too much. Asking why. Asking if God thinks he's funny. He comforted me.

I don't know what's behind the next door, but I know God is good.

I continue to ask for prayer for all my needs. Sharing my story is also another way to support me on my journey. Read more here: Carrie's Blog


Thank you!!!

❤️
CB

Matthew 6:25-34
25 “Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes? 26 Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? 27 Can any one of you by worrying add a single hour to your life[a]?
28 “And why do you worry about clothes? See how the flowers of the field grow. They do not labor or spin. 29 Yet I tell you that not even Solomon in all his splendor was dressed like one of these. 30 If that is how God clothes the grass of the field, which is here today and tomorrow is thrown into the fire, will he not much more clothe you—you of little faith? 31 So do not worry, saying, ‘What shall we eat?’ or ‘What shall we drink?’ or ‘What shall we wear?’ 32 For the pagans run after all these things, and your heavenly Father knows that you need them. 33 But seek first his kingdom and his righteousness, and all these things will be given to you as well. 34 Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.

Posted on May 14, 2017

Posted on May 14, 2017

Apparently when I said if it isn't one thing it's another, the universe took it as a challenge ;). I just found out that increased gastro issues I've been dealing with for months and months is actually a serious colon infection. On top of the issues I already have been dealing with, I contracted Clostridium difficile (c.diff for short). I started taking yet another antibiotic, doubled up on probiotics and am managing pain with continued pain meds. Amazingly enough, 24 hours into meds, about 30 minutes after saying goodbye to one of my friends and her family who are moving to CO, I started coughing, wheezing and dealing with heavy chest pain. I'm pretty sure I've come down with allergy induced bronchitis as well. Thank you California bipolar weather!

I am also in a seriously tough spot. My short-term disability ended May 11. I cannot go back to work as my doctors do not want to release me until after I have surgery (which I need funds for or insurance approval- we're trying to acquire at least one procedure approval- and I will most certainly not be released with this infection.

I am laughing as I type this - I am aware of just how crazy this whole situation of mine is and can only do my best to get through it!

I want to be clear that I do trust that God has a plan that is magnificent and perfect! While I have played out the '12 options to save me from this nightmare' over and over and over- I just can't see any clear direction. Up until yesterday, I thought it was to go back to work for a few months (which has its own scenarios- as my position was filled and I gave to hope something with my skill set is available on the project if I can get the dr to release me) BUT every day with each new dramatic health crisis addition, it's harder to think it's His plan (since I can't go back with this infection and it will take at least three weeks before we can determine if we kicked it!

I write because I'm flabbergasted. I don't know where to go from here! I feel like writing helps me release my worry and to ask for your prayers and good thoughts for support are appreciated.

I am so thankful for your time in reading!

So much more about all I'm dealing with is on my website if you're interested, including a very helpful wrap-up from the conference I attended a couple weeks ago called 'A Quiet Heart'. Carrie's Blog

All my love & gratitude, 

CB

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