Medical Travel Waiver

I know everyone has been wondering about possible dates for travel, but everything has been so unknown. I’ve also had more kidney stones this week and a trip to Dallas for a nephrologist appointment so it’s been another very difficult week. We had some discouraging feedback from the German Embassy here and our insurance so we honestly didn’t know if a trip to Germany would happen until like Spring because of COVID travel restrictions. Fortunately I have a very determined uncle who has been using his own German contacts to figure out things to try. He wrote to the German Federal Police about our situation and this morning called me with the wonderful news that if we can get the German doctors to write up a letter, we should be able to be accepted into Germany if we fly there. 

My uncle is already looking up tickets and we could possibly leave as early as July 6th. Today we’ve been trying to get everything in order and figure out all the details, but I wanted to finally make an update and ask for my prayer warriors to pray for a way, financially & travel wise. Yesterday I was having more doubts, especially hearing more reports in the vascular compression groups of the German surgeon considering retirement at any time. We have a lot of odds against us, but I have seen the power of prayer and what God does with the impossible so I trust Him and how He uses others in unbelievable ways. I mean how much everyone has donated already is a testimony to that. Everything each person is doing, the sharing, the praying, the donating, the encouraging words, the advice, they are answered prayers for us and blessings that we could not fathom when we finally decided to open up about what’s going on.

I know some of you had no idea any of this was happening or to the extent. Honestly my husband and I are pretty private people and had lots of discussions about putting my story out there or not. We also have a difficult time asking for help. That has had to change when we no longer had a choice not to. I also thought if I or my family didn’t talk about it, no one would worry. Unfortunately this didn’t actually help and we had some really scary times this past year that I know they were worried they were going to lose me. To be honest some nights I didn't know if I was going to make it and the reality is that things are pretty desperate. I’ve had some pride I’ve had to finally release and admit how different my life and my family’s life has become with my illnesses.

I felt guilty bringing up my girls because I didn’t want people to think I was using them to get help, but honestly this affects me being a wife, mom, & our daughters’ lives. My oldest tells me daily how she wants me to go to the doctor so I can feel better to play with her. I’ve learned to accept the type of mom I currently am for the girls and let go all the expectations I had, but I know when I’m in so much pain, I can’t even be the mom for them emotionally or my happy self because I’m hurting so bad. Those little girls are my biggest advocates and have more empathy at such an early age, but I know if I don’t get surgery, I don’t know how much longer I will be around for them. I’m crying as I’m typing this and starting to reconsider sharing all these words, but I know that if I don’t, people won’t start taking these vascular compressions seriously. I’ve had a post in the works for weeks now about death rates for someone with SMAS, which often isn't diagnosed or believed until autopsy. 

Pictures from back in February after my iliac vein stent surgery that we hoped would give me some relief in the meantime while trying to find a surgeon or figure out surgery to help with my other compressions. 

"I will trust you Lord, I will fear no more."

Invisible Illness

After my husband helped me write up my story for the gofundme page, I had picked pictures to include with it and had my husband look over again. He said "Marlee, you can't share any of those pictures, you are smiling in every single one and look healthy and happy." I struggled with that. That's part of my testimony. When I'm at a doctor appointment either in the waiting room or in the office, when people start asking me what I have or what's wrong and start learning what I've experienced, they can't believe I still have a smile or positive attitude. That's when I have the perfect chance to tell them it's because of God and my faith. This past year what got me through a lot of the most difficult nights in my life is when I heard that "sometimes someone needs to see you suffering well." I look back on this past year and I didn't go out very much or do much socializing, but God put a lot of people in my path in unexpected ways. From a person calling from the hospital to do the surgery pre ops (written about here) to making lifelong friends that helped me or I helped them get diagnosed through online support groups. 

Like I explained here, having an invisible illness made things a lot more difficult in my path to diagnosis. Using a cane has actually been a mix of feelings. I put it off way longer than I needed to because honestly I was embarrassed to use it. I knew people would stare more and wonder what was wrong with me. Finally after I got one and started using, I saw that people could not help themselves but come up to me and start up a conversation because of their curiosity. At first I didn't know how to even talk about my health because it's so complicated, but with the more people that asked, the more I got better at explaining and saw what a beautiful opportunity it presents to share awareness. To be honest, after I finally stopped hesitating using one all the time, I was thankful to have it to make my illness a little less invisible.

I know it's hard for others that see me to understand how I could be so sick, especially when on the outside I may look even better than ever (since I've lost a lot of weight the past year). Unless you don't have an invisible illness you probably have no idea about the eternal battle we face about how we look and leaving the house. Some of my good friends and swim teammates growing up remember that I very rarely didn't have makeup on (yes, even while I swam and at practice or meets). I just felt more confident with it. Well when you look put together, it's hard for people (and doctors) to believe that you don't feel good. What makes this a challenge is, say, I need to go run an errand. Putting real clothes on (besides just the comfy stuff) and blush or lipstick can make others think, "oh she must be cured now" when in actuality you just wanted to feel normal and get dressed up for once even though still in excruciating pain and experiencing terrible symptoms. I remember a family get together awhile back when someone said to me "I'm so glad you are feeling so much better that you could come today!" I didn't even know how to respond because it was far from the truth. I just desperately wanted to attend the gathering and spend time with those I loved, but the whole time and two weeks after I paid dearly for it with worse symptoms from pushing it too much. I talk a little more in detail about that and the spoon theory here.

So back to how I started this post. I did post pictures on my gofundme page that show more of a glimpse of my severe and debilitating pain. I realized though that my other social media pictures can show who I really am. Who I really am is that I put smile on my face even when I'm gritting my teeth, tears down my face, curled up in a ball with my heating pad taking deep breaths. So if you want to see the pictures I had posted originally (believe me I had my choice of hospital and surgery pics to choose from), they are below. That's why I chose the name for this blog (with the help of my sister). I'm a chronic pain overcomer even though I'm currently experiencing the chronic pain, I'm overcoming it with the Lord.

A Note of Appreciation

There are really no words to describe how in awe we are of everyone who has donated, shared, commented, and liked my gofundme and Facebook page. The pouring of support and love brings me to tears everytime I see a new notification, beyond humbling as it was quite difficult to admit the need and ask for help.

As I overhear my husband on the phone say “all the doors have been closed in the past and they are just all opening showing us this is the way” it couldn't be more true. I tried to keep my background story as brief as possible and things are not set in stone yet, but I wanted to mention that my EDS doctor was actually the encourager to take this leap of faith and that if it worked out, she would accompany me to Germany so we could learn and take back the knowledge to top doctors she’s found who are willing to learn and help other EDS patients just like me.

I will continue making updates on my blog & gofundme page. Another little coincidence in all this is that my uncle is from Germany. Because of COVID there are still travel regulations preventing us from flying or scheduling anything yet. My uncle will be calling back the German Embassy on Monday to see if there’s a possibility of getting restrictions lifted for this medical situation because of my deteriorating health. On the German end all things are good to go and they are ready when we are. 

To all my old friends and new, family close and far, and strangers who are now blessings, thank you. 

Lifesaving Surgery & Hope for Others Like Me

I've been on quite the journey to get answers for my health, but I would never imagine the answers would be a rare illness, as well as even rarer compounding chronic conditions. Over the past 20 years, through a great number of doctor and specialist visits, along with multiple procedures, I was finally diagnosed with Ehlers-Danlos Syndrome only this past year.

Some of my symptoms include debilitating pain, painful eating and drinking, vomiting, chronic fatigue, nerve damage, and pulmonary irregularity. There are many days that I, a previously top performing collegiate athlete, cannot even get out of bed due to the excruciating pain. Left untreated, EDS, along with it's numerous other accompanying diseases, will often lead to permanent nerve damage, blood clots, and even fatal organ failure.

As a mother of 2 young daughters, I had faith in God that my suffering would have purpose. I believe that purpose is to spread the knowledge of my condition(s) to not just those silently suffering in the public, unable to reach a diagnosis, but also to the medical community. I have faith that I will eventually be able to help a great many men and women be properly identified as suffering from an almost invisible illness and receive appropriate treatment.

Unfortunately, these conditions are so rare, and so little is known about how to treat them, that the only possible surgery for me in the near future is with a set of highly specialized group of physicians in Germany. These doctors have taken a deep dive over the last couple of decades to really determine the underlying causes for the pain and debilitating symptoms associated with EDS and vascular compressions. I am asking for your assistance now in not just trying to save my own life, but the lives of many others for whom I intend to endlessly advocate in the future. The goal of this fundraiser is to cover the travel and surgical cost my family will incur while seeking significant invasive surgery.

I have 5 vascular compressions that include Median arcuate ligament syndrome (MALS), Superior Mesenteric Artery Syndrome (SMAS), Nutcracker Syndrome (NCS), May-Thurner Syndrome (MTS), and Pelvic Congestion Syndrome (PCS). If you'd like to know more details about my journey or explanations and visuals about what I have, look at the tabs at the top of the page or to the right under the archives.

Even if you are unable to donate, please do me the favor of seeking out and listening to others in your life who have seemingly invisible maladies. It took many rounds of "everything looks normal" tests and visits to finally find the right combination of words and procedures that led to diagnoses. There are so many in my position who are not as fortunate to have the support of friends and family that I do, and find themselves at a dead end. I want to make sure that we can eventually minimize the years of delayed diagnosis, and help to advocate for establishing effective, standardized treatment for all. Thank you and God bless. 

If you would like to donate this will take me to my gofundme page:  https://gf.me/u/x9vk85

If you want to share my story on social media, please use #chronicpainovercomer