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2/29/2020

Rare Disease Day

My gift is definitely not speaking, especially with the brain fog, and I am so proud of the ones who do. So I want to share what they say and their videos when I can get the chance because they do a much better job than I could ever do explaining or describing.



We will be watching this today on Netflix. I actually watched her TED Talk a few months back and when I googled her a few days ago trying to find the video again, what would you think I would stumble on? That she now has also been diagnosed with EDS & POTS.



This is my friend Angie who when I found her YouTube channel a few months ago, thought her story was my story. She is such an inspiration and raising 3 young children while dealing with multiple rare illnesses.



I wish I had saw her video years ago. I have a similar story in that I also luckily ended up in an expert's hands. I remember thinking this cardiologist would be another waste of time where he would just say my heart looked fine. I would never expect that he would not only diagnose my POTS, but also my pelvic and abdominal pain because he was an EDS researcher that people fly all over the country to come see.


You can also look back at this post where I shared more people's stories with vascular compressions.



This video is one of the best at showing such a true example of what most EDSers experience going to a doctor or ER and the patient's reaction to hearing she has it was very much my reaction when I found out. Bravo to this show for doing such a wonderful job portraying what it's really like.



This week I found out that EDS was mentioned in The Good Doctor TV show and before that The Resident (above) and Grey's Anatomy. Although our community has been so thankful to have light shed on our rare disease, we all wish we came across those doctors in real life that are actually determined to figure out the puzzle.


Another big deal is that we have representation finally! Celebrities and people in the spotlight are now speaking up that they have EDS and causing more awareness and attention to our illness. 



Jameela Jamil was the first and she does little shout outs to her zebra community all the time.



The next was the singer, Sia! It's interesting because I've always identified with her songs and after learning that she has EDS, it just gives so much explanation to all her words on a different level.



Miss Maryland! Another great article write up on BBC here.



and Miss America! More on her here and how EDS got her interested in science and medicine.


POTS is not rare just not well known, MCAS is rare but well known, EDS is rare and not well known (but shouldn't be), and Vascular Compressions (MALS, SMAS, NCS, MTS) are rare and having multiple is even rarer.



I love this that my friend Michelle made! In the first video at the start of the post Jennifer Brea shares how big of a deal the community she found was with the same issues. They were the ones having to try different things themselves and research because most doctors aren't. The determination and want to help others of people with these rare diseases is just incredible. The special person that creates a Facebook group so they can share with those just finding out a diagnosis and help them navigate or prevent problems they had to experience. They are the ones making a difference.


I know this week I talked about why it's important to share, why friends & family support is also so important, but what I wanted to focus on this post is to champion those with rare illnesses. I ask if you know someone with a rare disease, please listen to them, encourage them, and tell them they are doing a great job. They are accepting, they are coping, they are adapting, even when life is so different than before or looks different than they expected, they are still fighting even if it's hard for you to see. If you know someone with a rare disease tell them how proud you are of them and how brave they are.


My fellow warriors, if it wasn't for you I'd be lost. You helped me find doctors, know what the right tests are, treatment options, surgery risks and benefits, that I'm not alone, that what I'm experiencing is real, and that we are here for each other. I can ask no question too insignificant and that you will be there to lift me up and understand when I have those disappointments of not being believed or a doctor not working out. Thank you.


2/26/2020

Family & Friend Support


February 29th is Rare Disease Day and we are so excited to wear our shirts for it that we just got! As important as spreading awareness is, I want to talk about family & friend support. This is how awareness is spread. I'm in awe how any chance my family and friends get, they will ask or tell about EDS and then usually the other comorbidities I have. I knew I would spread awareness, but I didn't realize the impact my diagnoses would have to inspire others close to me to do the same.


I have made a blog series called Human Beings are God's Love Language, but I have to make a post about my family and friend support. Since I have started this blog, I have been overwhelmed daily by the support I receive by my family & friends. My husband is always shocked when I tell him that others don't get to experience this, there are many that are not believed and not supported. It means so much that family and friends want to support and learn about my rare illnesses. Awhile back I stumbled on a YouTuber with EDS and POTS, unfortunately she lost her life. When I was searching more about her I also stumbled on multiple sites of people bashing her right after her death and saying the cruelest things that she didn't really have any of these illnesses and was making them up. Shock. Just shock. This beautiful soul wanted to help spread awareness and was mocked for it.


Shortly after I got my EDS diagnosis last April, my mom got a few of us shirts. My step-father wore his bright green EDS shirt when he drove me to Dallas for my nuerologist appointment. Right before New Year's my aunt called me and asked what organization she could donate to for EDS. Both of those actions just poured into my heart. Family and friends telling me that they read the blog and keep up with me and are so glad I write about what I'm going through. That encourages me more than they could know. Someone actually googling about EDS or my other rare diseases wanting to learn and know more besides what I just tell them, that, blows me away.


My sweet family and friends have specifically asked what not to say. This is a great article for that:
14 ‘Harmless’ Comments That Actually Hurt People With Ehlers-Danlos Syndrome


This article explains helpful ways to be there and what TO say or do:
To the Friend or Family Member Who Doesn't Understand My Illness


I am so fortunate that we had people who did a lot of these in this article especially after my surgery:
10 Practical Ways to Help a Friend During a Chronic Pain Flare-Up


One of the biggest things that has changed about me because of my illnesses is my unpredictability. I used to pride myself on being reliable and punctual to a "T." Planner was an understatement. When I had to start cancelling plans on people I was so afraid of doing this often and multiple times that I just stopped trying or making plans all together. I hated the fear of disappointing people I care about or them thinking I was flaking out on them. It continues to surprise and overwhelm me that I have friends who still invite me even when I've had to do rainchecks too many times to count and always have an excuse why I can't. It doesn't hurt any less and causes guilt when I still have to do it (even though they understand and don't expect). These people are blessings to me.️


For those of you who have asked to donate (and thank you so much to the ones that already have), here's the most reputable non-profits for my illnesses that give money for research & awareness:
-The Ehlers-Danlos Society
-National Organization for Rare Disorders (NORD)
-National MALS Foundation


If you would like to buy a shirt or gear to support, here are some of my favorite websites:
-Spoonie Shop (10% of procceeds go to NORD and she's a good friend of mine with similar issues)
-Hope Essentials (another friend of mine who's proceeds go to her and her sweet little family)
-EDS Society
-National MALS Foundation


I loved what a woman from my MALS Facebook group said recently and would like to pass on Nancy's words: "The nicest thing you can say to anyone with an invisible, chronic, mental, or undiagnosed illness is, I am listening and I believe you." This explains why that is so true and how validating it is for someone with a rare disease when they do get that. Thank you to my family and friends who have given me that and so much more ❤


2/25/2020

Transplant Doctor Appointment Scheduled!

2 Corinthians: 4:16-18: "That is why we never give up. Though our bodies are dying, our spirits are being renewed every day. For our present troubles are quite small and won't last very long. Yet they produce for us an immeasurably great glory that will last forever! So we don't look at the troubles we can see right now; rather, we look forward to what we have not yet seen. For the troubles we see will soon be over, but the joys to come with last forever" (NLT).

It has seemed like I haven't caught a break the last month with health issues, BUT the last week has been pretty monumental. I had an appointment with an exercise physiologist Thursday that rocked my world and gave me hope with exercise. Then I had a phone appointment yesterday with my EDS doctor and just in 15 minutes, we covered 2 pages full of questions and concerns, and now I have a plan, doctor referrals, and hope in treatment. Today I was able to get an appointment date with the transplant doctor for my Nutcracker Compression Syndrome because of my cardiologist referral last Thursday.


I am also getting my PICC line removed tomorrow thankfully. I've been trying to write that post, but honestly have not had the energy to explain what a nightmare it has been. As disappointing as it was learning fluids don't benefit me like normal POTS patients, my EDS doctor showed me my reactions may help piece more puzzles together.




I know part of me didn't want to share and to be cautious to celebrate or be happy, the feeling that when I do, something is just going to go wrong or I'll have disappointment again. Brene Brown talks about foreboding joy in the above video explaining about this. God has shown me what a blessing it is to praise Him in the hard, but I can't also be afraid to praise Him in the good. So today I am praising Him for the positive and if you are going through difficulty, hang in there.


Proverbs 17:22: "A cheerful heart is good medicine,
but a crushed spirit dries up the bones" (NLT).


2/24/2020

Why It's So Important to Share



In this article they talk about how this person finally figured out what was wrong with her not from multiple doctors and tests eventually, but from a friend. The above is a video of a man who figured out what he had because he saw my friend's story on the news. Although in my case it didn't happen that way, I did have family and friends do lots of research for me over the years investigating and ears perking up if they overhead someone else with similar symptoms finally get an answer. Thankfully those people never suggested anxiety or that it was in my head or I would've probably wanted to punch them in the face (so know that is not what I'm recommending).


So today I really want to talk about the importance of sharing. My rare illnesses actually shouldn't be that rare, they just unfortunately go undiagnosed and when they finally do, like my story, it's years or decades before finally figuring out what is wrong and by that time so much has damage has been done.


What motivated me to write this is I was reading on one of my support group Facebook pages and saw that a women had 8, yes 8, CT's done with doctors telling her she did not have MALS when she actually did. I wanted to bring this subject up, but in actuality I have no words. Thankfully I only had 2, but when I describe these people with rare illnesses like EDS or MALS as warriors, I mean it. They have to fight for answers, for belief, for pain relief. Unfortunately some lose the fight and lose their lives.


It just makes me sad that because something might be considered "rare" even if all the symptoms add up and no other diagnoses fit, a doctor or nurse is too wary to say yes, you could be that rare percentage. My rheumatologist finally wasn't too wary to say yes and I will be grateful to her for the rest of my life. She really had no idea about EDS or come across a patient before with it, but she connected those dots and she did the Beighton Score Test and because she wasn't an expert, she wanted to make sure I got in an expert's hands before ruling out or confirming.




Something mentioned between us chronic illnessers is that say you are having symptoms and go in. A doctor will run tests, but they all come back negative. What is it they do? They say everything looks good and you must be healthy instead of ok, we need to start thinking out of the box and find out what could be causing these symptoms then. I just see story after story of ER situations especially where someone knows their body, heck their family knows something is wrong and they finally get up the nerve to go in, but they are made to start doubting because they didn't find anything immediately. It's difficult because I can of course see the other side that the ER is for emergencies and they have to be quick and don't have time to figure it out and just release you. But that person comes back later because they know something is not right and they continue doing worse. Eventually they either fight with the doctor and the doctor believes them and low and behold they had a blood clot or organ failure. Or unfortunately they just give up and go home and pass away.


Back to the whole point of this post. Awareness. Sharing. What if that ER nurse or ER doctor had a friend who had EDS and was vocal about symptoms and comorbities? What if they knew that they were more likely to have blood clot and organ failure so they didn't run the normal tests, but over and beyond?


Shortly after I got my EDS diagnosis, a friend who's a labor and delivery nurse told me that she actually had a patient come in with EDS. This patient was on very high doses of pain killers and her fellow nurse was making comments about how she must be faking and this was the problem with addiction. You know what? My friend understood this patient and had empathy because she knew my pain because I had shared with my church my struggles and what was going on. To know that a fellow EDSer was in the hospital I'm sure terrified and in pain, and she had a nurse who didn't question her pain, believed her, and wanted to help her makes me so beyond proud and worth putting myself out there on the internet and social media. If my friend is reading this, thank you.


I also wanted to add I just found out that there is a Continuing Nursing Education Program for Ehlers-Danlos and if you'd like more information it, click here. Also a course for physicians: https://ehlers-danlos-cme.org/course-overview/. I'll leave you with the phrase that I've learned that I hope will one day save someone's life:



2/14/2020

Being a Mama Doesn't Stop When Chronically Ill


I first wrote this post right after the holidays, but life happened and I thought I'd share on the next holiday known to usually be involved with lots of kid activities, Valentine's Day. I've had to adjust my expectations this week and will talk in detail next week when things are more set in stone, but had a blood clot scare Tuesday and ended up having fluid overload. Since I've had to be just waiting and observing while it improves, I've been pretty confined to the bed. Not knowing how I was going to feel for Valentine's Day, I had been brainstorming ideas to make today special because my mom always did, no matter how small it was, it was always meaningful and a day to show how much she cared about my sister & I.

Here's the post from Jan 3rd:


I am writing this post during the worst bout of sickness we've had since we had the girls (and there's been a lot) on top of a flare so it's been a rough time since last Friday when it started with my youngest. This is a great explanation of what it's like to get sickness on top of being chronically ill. We took our New Year's Eve pic with just me and the girls because my husband was in the bathroom throwing up at that time and it wasn't even difficult to stay up until midnight since we had been pulling all-nighters the previous nights. I know a lot of people are also experiencing sickness going around and it's so difficult when you have to take care of sick kiddos or if you're the sick one, but still needing to take care of the other energy filled, healthy kiddos. I feel like that's the best scenario to show you a glimpse of what it's like living constantly with one of my diagnoses - the crippling fatigue, the abdominal pain, the nausea, the headache, the aches. As hard as this week has been, when sickness like a stomach bug hits ours house, the girls usually behave surprisingly in ways that blow us away. Being more patient, more independent, and playing by themselves are just some of the things that I realized they do because they understand when someone doesn't feel well.



After we had our first daughter, we contemplated only having one child or toughing out another sick and miserable pregnancy to give her a sibling (this was before my EDS, POTS, & MCAS diagnoses). Even before she was a year, W had a very motherly and outgoing personality. We knew she would blossom with a forever playmate. I think about this a lot especially times like last Monday when I got disappointing news on the phone and burst into tears. W ran over and consoled me and said way too mature phrases for her age reassuring me she will take care of me and things will be ok.


Oh, the guilt of that. The guilt that it's not the 1st time she's seen me crying. Guilt that she knows so much about doctors and appointments, mommy's medicines, and mommy getting treatment that a 3 year old shouldn't know. Guilt that we thought pregnancy and a hysterectomy was supposed to make my health issues improve and not the opposite. But in moments like the one above, when both girls react in such loving and caring ways, I can't help but realize they are learning positive things from all of this, like empathy.


The holidays just passed and you can assume that guilt would be a forefront during this specific season. The season of events, parties, activities. Unfortunately I couldn't really do those things like years past. So taking our girls to see Santa, to the Christmas parade, or even just driving all over look to look at lights were some of the "can'ts." So yes, there was definitely guilt, but there was surprisingly also grace. Grace that such little things can bring so much joy to a 1 & 3 year old. You better believe we watched some great Christmas movies, read Christmas stories, sang Christmas songs, and did a little bit of crafting.


So we don't have the memories of reactions to Santa this year, but I can tell you the memories of sipping hot chocolate and doing "cheers" with our mugs, the girls being the ones to decorate the tree and absolutely loving it, C baking donuts with W because she's been obsessed and asking for them, W being so excited to write and spell her name in a Christmas card, the girls being so proud to pick out presents online and then help wrap presents, and picking out their fun Christmas jammies each night. We can still make plenty of memories, I need to just adjust my expectations on how much we can do and realize that the girls don't care what we do as long as we do it together. I thank my aunt for making sure I knew this and that her boys grew up not thinking or feeling any different about having a mother with health issues.


What makes me proud is how they will grow up being normalized that people have canes, they use heating pads, that people have fatigue and pain and have to spend time on the couch and it isn't because they are lazy. Disabilities and support devices won't make them stare, think twice, or not know how to act because they had plenty of practice with me. They will be grateful to do any new activity or tradition because they know how much it took their mama to participate in it. Yes, being a mama doesn't stop when you're chronically ill, but it can be an opportunity to be creative on how you will celebrate and enjoy special times or holidays.


2/13/2020

Vascular Compressions {Part 2 - Treatment}

If you haven't read Part 1 or know what vascular compressions like MALS, SMAS, NCS, & MTS are, please read it first. If you are curious about how I was diagnosed and what symptoms I have, you can also read that here. I've held off making a post about treatment for the vascular compressions until I actually had a treatment plan and because there is just so much information, research is constantly changing, and I keep learning more and more that I didn't know beforehand.

So what can you do if you have them? What is treatment or options?




The controversy and why the news of the doctor I hoped would help me is no longer an option was so heartbreaking is that him and a German doctor look and do surgeries on the compressions as a whole instead of each one as a separate problem. They believe more compressions develop when the previous ones aren't treated. If you fix the compressions and blood flow at the top of the aorta (see above picture) with the MALS or SMAS, then the compressions below a lot of times will fix themselves without further surgeries. This is why I originally held off on jumping to do a stent or auto transplant for the MTS and NCS. What I have also found from others' experiences is that they might do a kidney auto transplant and get relief for a certain amount of time, but then the pain returns or even before that, the digestive pain begins, leading to a MALS or SMAS diagnosis and needing another major surgery. On the other hand, you don't know if someone who has multiple compressions with EDS just has the problems so bad that each one needs to be fixed anyway and that it will be an ongoing upkeep of our faulty veins and arteries.


Source


It is so difficult to know the right thing to do for a person who does their research and talks to others. Those who do not, unfortunately end up with 3 or 4 surgeries that may have not fixed or made things worse because the doctors who treated them didn't even understand. The biggest fear for all of us is that something gets missed or overlooked because it happens, it happens a lot. The problem also is that we can't just wait it out or decide not to do surgery. Those risks outweigh any other risks of surgery because of organ failure, stroke, blood clots. A big topic in our support groups is the damage to the organs, for example non alcoholic fatty liver like I have, and possible pancreatitis or kidney infections that we are looking into. The picture above shows how the organs and blood flow are affected with these conditions.


Source


Ok let's get down to specific treatment for MALS & SMAS. There's usually two options - open or laparoscopic. A lot depends on the doctor and their preference. Laparascopic is obviously an easier recovery, but there is some that say it's harder to see doing it that way, which can be easier to miss cutting enough of the nerves or Median Articulate Ligament and can reattach leading to another surgery. Another dispute among surgeons in the US is that some believe it's only neurogenic (nerves) and others believe that it's vascular or ischemic (blood flow) that's causing the pain and symptoms. That is another way that someone may have surgery only releasing the ligament, but need the nerves, ligament, and artery all trimmed or addressed so they will then need further surgery. A lot of doctors also require a celiac plexis block to see if a patient will get relief as a diagnostic tool before they agree to do surgery for MALS. For SMAS, the most popular surgeries are a duodenojejunostomy or SMA transposition, which you can read about both in further detail here.


Source


For Nutcracker Syndrome (NCS) there have been misled attempts to do a stent in the renal vein, which has caused a lot of people issues and death. When you start to research or join the Facebook groups for this syndrome, you usually learn that you will avoid this treatment at all costs because of horror stories. My cardiologist actually told me when he diagnosed me never to do this. Some doctors have been testing the water with doing an external PTFE graft that is sewed in, which is more popular and successful in Germany and China. The other successful surgery, although the most invasive, is the kidney auto transplant. The surgeon will take one of your kidney's (I believe it is usually the left) and attach and place it in your pelvis. Like the MALS & SMAS surgery, some doctors perform laparoscopic and others perform open. A surgery choice that is most drastic, but also gaining popularity because it has given relief to patients has been nephrectomy, just getting rid of a kidney completely.


Source


Now with a serious open surgery to fix these compressions there are risks in itself - bleeding, organ perforation, bowel obstructions, hernias, and because of EDS, we are even more likely to form scar tissue or have veins and arteries collapse that need a stent to stay open. I've heard a doctor describe the insides of EDS patients like cottage cheese. So even if the compressions are fixed correctly after the surgery, and with no fault of the surgeon or patient, our bodies may not heal or adapt like we hope and need further surgery.


If you have stayed tune until this part you may ask "Why did you now decide to stent your MTS?"


Source


Because I finally found a vascular surgeon who
a) I finally trusted
b) his knowledge of EDS & POTS
c) his experience with actual patients (a lot of college students who he gave them their life back), and
d) told me we needed to get blood flowing again with my iliac vein and to do it soon before I did develop a blood clot, which is when most of the time his patients ended up coming to see him after it was too late.

*If you were like my husband who knew how anti-stent I actually was before this appointment, you would be pretty curious how he was able to change my mind.

Besides just having peace from God about it (which I'll share in a future post), he also had no problem doing an angiogram to check blood flow of the NCS, SMAS, and MALS next if I was still having pain after the stent, but felt that it would be best to try least invasive surgery first. Especially if it gives me pain relief in the meantime. Even after reaching out to other friends who have EDS and the multiple compressions and surgeries, they agreed they would've still done this surgery first. You hate for anyone else to have these vascular compressions or have to go through any of this, but I'm very thankful for the ones that have gone before me and want to share their experiences and expertise to help others.


2/12/2020

Hope


Right before my stent surgery I had a not so great phone call. Heard back from another vascular surgeon for my MALS and was told after all of the time and energy I spent getting all my files and tests and imaging to them, that I needed a complete work up again (another colonoscopy/endoscopy as well) because it was five years ago when it was done and it had to be more recent before the doctor would even look at my imaging. To say I was discouraged after that phone call would be an understatement. I could not believe even after finding new doctors and a path, that I would still have this happen to me. It just reminded me of how many doors had been shut in my face, how difficult this whole journey has been, and how I've just had to keep fighting and fighting for more disappointment. Those of you know who you are that I called in tears. I just couldn't understand. Why God? Why does every single thing seem so hard? Of course my sweet family & friends didn't know what to say, but to comfort me.


Skip to the next day. I was trying to pack and prepare for being gone a week and was just completely overwhelmed. To say the week prior to surgery was just a little rocky would be far from the truth, it was a bad week. I get a text from my sister that her friend who she shared my story with had made some arm covers for my PICC Line and was wondering if she could drop them off before we left.  Not only was it just a huge blessing that she crocheted these perfect fitting covers for me without asking for payment and created for a stranger, but she let God use her and every single word that came out of her mouth was exactly what God had been telling me this past year. It was the sweet, sweet reminder I needed to hear. She told me that the word "Hope" just kept coming to her and to tell me none of the things that were happening was because of me, but that God was using me for people to see Him. I'm of course bawling as I'm typing all of this. After she left I had to have my sister send her a picture of the journal I had bought as a reminder and let her know Hope was in the title of my book I've been writing.


I can't tell you how many times this past year with all my appointments, traveling, procedures, tests where someone starts asking questions, I start sharing my story, and they do a double take. First off they can't believe what I've been through and second of all they can't believe I still have a smile on my face and a positive attitude. It's a perfect opportunity to share my testimony and what God has done in my life and continues to do. Of course the rest of that weekend God didn't stop giving me more reminders, answers, and peace. I come across this article about someone needs to see you suffer well. I have finally found my purpose. I had been searching and nothing quite fit or explained why until that bad week. I had two women call me for first the pre op to get my PICC Line put in, and then my pre op for my stent surgery. They have to go through and ask all these questions and they start to ask more questions that aren't the required ones, and I hear a change in their voice especially when they find out I have two young ones at home. I may not know why they had to hear my story or see me suffering well, but I can have faith there's a reason and I'm going to let Him use me for it.


Another just huge like epiphany that I had that week was what if I hadn't gone through what I have? There's no way I would have the confidence to share my testimony. I am an introvert. I am a perfectionist. You better believe there is doubt and fear about sharing any of myself or what I'm going through. What keeps me tucking that away and doing it anyway is that I can't miss the chance for someone to be led to God. He is the only thing that gets me through every single second, minute, hour, day and I want you to know Him so you can also get through every single second, minute, hour, and day when things get tough.


Philippians 1:20: "It is my eager expectation and hope that I will not be at all ashamed, but that with full courage now as always Christ will be honored in my body, whether by life or by death" (ESV).
                                                         

2/11/2020

Dear Doctor: Thank You

Dear Doctor,
I had almost given up hope in doctors until you reminded me there are actually still doctors that want to advocate for us and not have to do it for ourselves. Everything I had been begging other doctors to do or help me with, you offered first thing without me asking. Because you did this blood test that every other doctor declined, I now have more answers and proof of my problems.


You listened, you validated, you backed up with research, if you didn't know something you told me and that you would find someone who did, you believed me, encouraged me, reassured me, did an actual physical exam, wrote me prescriptions for medicine that actually works, made sure every topic or question was answered, and that we had a plan before leaving your office.


If only I had you years ago when I first started this journey with pain and symptoms. I thank you. I know it's not easy to be a doctor this way, it's not the norm. I think about all the things I wouldn't have if you were my first doctor. I wouldn't have white coat syndrome every time I go to a doctor. I wouldn't have disbelieved anything was wrong or that it was in my head or just "stress" or a diet would cure me. I wouldn't have done so much wear and tear on my body and knew how to take care of and prevent further issues. I wouldn't have toughed it for years thinking pain was normal causing even more damage on my autonomic, nervous, and vascular system.


I know you understand because you were me. You had to experience this yourself. When I told you my health problems, one by one, you had identical; even the misdiagnoses, scary pregnancy, and multiple surgeries. You learned what doctors to go to because you went years going to the wrong ones just like I wrote about in this letter.


I was hoping for answers, but I was not expecting everything else with you. I was not expecting to find a doctor who would actually teach me something and not only have answers, but wanted to get me answers and action immediately. Someone to be my advocate. Sharing the disbelief why doctors hadn't helped me in the past, but comfort that I now had someone on my side.


Doctor, you have not just given me hope again for myself in the medical community, but hope for my daughters who could inherit these problems. I was able to ask freely questions for them and wasn't laughed at for doing so, but encouraged to continue and given helpful tips because you have kids and they've experienced. I got answers for them and validation as a mom.


I will never be able to thank you enough for how you've changed my life. I just hope together we can change the typical doctor experience. To also make it so that an EDS patient does not go 20 years and 20 doctors before a diagnosis.


2/10/2020

Since the Stent Surgery

Thank you so much to everyone who has messaged, called, reached out, commented on Facebook or the blog. I wanted to be better at updating everyone during this process, but to be honest it's been a bumpy road. Let me first say we know the stent was definitely needed and can see major improvements because of the blood flow. I didn't even realize how bad the swelling in my legs was from the compression so I could tell a difference even the next day after surgery. 


The 3rd day I thought was the worst pain-wise, which is normally always the most sore. When day 4 and start of day 5 hit, the back pain was gone, and although I didn't proclaim it to anyone, I started hoping this was the turn around and that I would be better from here on out. Unfortunately later that day I had a hard reminder that recovery is a marathon and not a sprint 🙂The back pain from surgery did eventually go away, but I was left with my previous pelvic pain and new leg pain that I haven't been able to get under control. Understanding how pain works and knowing that my iliac vein had been that compressed for so long, I know it is still soon after surgery and that there is still hope for it to disappear, but I do want to be honest that as of right now I do still have it.


The plan with my vascular surgeon at my post op is to see him in 3 months and do an ultrasound on the stent to make sure there's no scar tissue or clotting. If it's still clear, I can stop my blood thinners. If I'm still having pain at that time, we will do another CTA and more testing to check blood flow on my other compressions and then look at more invasive surgeries. Right now I'm also supposed to be receiving IV fluids multiple times a week to help with the compressions and symptoms. With my recent added leg pain just from others' experiences, it could mean that opening the blood flow in the pelvis is now showing how bad the damage had been in the legs from almost being cut off for years.


Along with the pain, I am having terrible migraines and really sick to my stomach, but I just kept thinking it was from this or that until I realized by the 5th day I was most likely not tolerating the blood thinner I started. Some of you know that I have a lot of issues with medicines and that can be part of EDS. I had done a medicine metabolizing blood test a couple weeks earlier with my EDS doctor and thankfully I got the results last week. Blood thinners hadn't been mentioned so I didn't think too much about it until I started investigating about not being able to take my CBD oil with my blood thinner because of an interaction. This weekend I realized that one of the genes that I ultra-rapid metabolize, actually affects the blood thinner I'm on. This could put me even more risk at for a blood clot. I am trying to be extra cautious since I do have a lot of overlapping symptoms of deep vein thrombosis.


I had tried writing a few update posts, but with those side effects, I just was just unable to collect my thoughts enough so I do apologize for keeping so many of you left hanging. Some of you also knew that I was very fortunate to be staying with my aunt and uncle until my post op appointment a week later, but that it also meant I had to away from husband and girls. I was missing them pretty bad. I also don't get a lot of opportunity to spend a ton of one on one with my aunt and uncle so I did want to soak up that special time with them because I was so thankful for all that they have done for me. With all things considered, we had a wonderful visit.


In the mix of all of this my family was waiting for my sister to go into labor. If she did not go into labor by February 3rd, they would do a c section. February 3rd is also my youngest's birthday and my post op ended up being February 3rd. My aunt & uncle drove me to the appointment at 1:30, we got on the road at 2:30, headed to the ranch where my step dad picked me up, and he took me the rest of the way. I arrived around 8:30 and I will just say it was the best homecoming to get to hug my husband and girls and wish my youngest a Happy Birthday before we put them to bed.


My beautiful niece was born on the 3rd and we hoped to possibly meet her the next day. I will write up a future post on some stress with my PICC Line, but will leave it that we were able to just make a quick visit  to meet her and congratulate my sister & brother-in-law. That night the temperatures dropped and we started to get snow, which ended up a beautiful birthday gift to wake up to! Some of you know that I grew up in Alaska so this was a wonderful surprise and some of the sweetest moments getting to experience that with my girls. My husband was able to stay home last week to get help take care of me and the girls and we've been overwhelmed with all the people who've signed up to bring us meals and the ones that already blessed us by cooking and bringing us some. Home health did finally make it out to change my PICC Line dressing and give me some much needed fluids before the weekend so just waiting to see how this week goes with that.


I have a ton of posts in the cue to catch everyone up on. Are there any requests or posts that you would like to see? I haven't said it in awhile, but thank you to everyone that has followed along with my journey ♡


2/09/2020

I Still Believe


Do you know how you go down the internet rabbit hole sometimes? I've been having some difficulty since my surgery when I would try to start writing to make an update, organizing my thoughts or what I want to say, or honestly just not wanting to press publish even after I do. Well I couldn't get my laptop out fast enough to type up this post after I watched the interview below.



"Scattered words and empty thoughts
Seem to pour from my heart
I've never felt so torn before
Seems I don't know where to start
But it's now that I feel Your grace falls like rain
From every fingertip, washing away my pain

I still believe in Your faithfulness
I still believe in Your truth
I still believe in Your holy word
Even when I don't see, I still believe

Though the questions still fog up my mind
With promises I still seem to bear
Even when answers slowly unwind
It's my heart I see You prepare
But its now that I feel Your grace fall like rain
From every finger tip, washing away my pain"

I mean the lyrics of the song couldn't be more true. I haven't known how to tell everyone I've been having a tough time since surgery. There's still hope for the pain to get better, a month is usually the time frame. The next post will go into detail and all the specifics on my recovery, but it has been hard. My go-to is still to distract, just not talk about, or put on a brave face without being honest about how things really are or how bad they really are. I think I still fear that someone will think it means I don't have faith in God when I'm not just positive or disappoint all the people who have been praying and believing that this surgery would heal me.


It's still tough putting myself out there, but what resonated with me the first time I saw the I Still Believe preview is that it's worth it if I can help just one person. God also loves to give me little details sometimes just for me and of course when I just re-watched the movie trailer it showed the couple getting married on the beach and running through sparklers I hadn't remembered. This movie also comes out in March, 2 days after our anniversary.


As Jeremy Camp said in the interview, everyone experiences pain, but we need to share our story to show hope and how God is with us, especially during the trials. Who wants to have a watching party with me when it comes out?