Tuesday, May 31, 2016

Leni Update May 2016

It's been a little while since I've posted about Leni, so I thought I would do a quick update. Also, if you didn't see the youtube video that I posted a couple of weeks ago, here is the blog post where I shared the link for that.

But anyway, how has the Bean been doing?


FANTASTIC!

We are getting more and more in tune with each other every day. Her alerts are getting more spontaneous which is great. Not always, so I do still ask her to check me regularly throughout the day if she's not alerting on her own. She has started alerting even in the car which is great when my sugars drop while I'm driving. My doctors love her and some have even seen her in action. Like a week or so ago at the endocrinologist when she alerted to a low sugar just before the nurse checked my sugar with the meter.

Having a service dog means training never stops. It is always ongoing and there are always things to work on. Since she is still not completely spontaneous, we work on getting her alerts with no prompting from me. I'm trying to do more and more work when I'm actually low rather than always using the frozen samples, but that depends a bit on the day. We also work on her spontaneous mast cell alerts regularly, but those always happen from the frozen samples because I cannot tell on my own if I am about to have a reaction.

It's interesting. I really thought the blood sugar alerts would be easier to get out of her, and we would have a lot of work to get her alerting to mast cell reactions. It hasn't been that way, though. For whatever reason, even though we didn't even start the mast cell alerting until she came to me and her blood sugar work had started before that, she has been pretty spot on to my mast cell reactions almost from day one.

She doesn't and can't alert to my day to day not feeling good. We never expected that from her. What she is trained for are my severe reactions, mostly anaphylaxis. When we first started on our service dog journey, we thought/hoped (based on talking to other mast cell patients with service dogs) that there was a scent associated with my anaphylactic reactions. That was what we chose to train for. When she alerts, it is typically about 10-15 minutes before my symptoms begin. This means that I can start treating EARLY which either significantly reduces the severity of my symptoms or sometimes stops my reaction almost entirely. The few times that I still progress to anaphyalxis even after her alert, we are still prepared and ready with my epi pens or other emergency medications. I am so thankful for her =)

A great example of her mast cell alerting came this past weekend. Nick and I went to the Columbus Zoo for my birthday (which is actually in September, but we celebrated this weekend =P). After about 3.5 hours at the zoo, we sat down for a bit while Nick went to get some water for Leni. While we were waiting, Leni got up and pawed me. I checked my sugar which was fine, so I pulled out my emergency meds to start treating a mast cell reaction. I took my meds, we gave Leni water, and continued through the zoo. About 30 minutes later, I could feel myself fading, so we decided to head back to the car. I started to go downhill pretty quickly, so when we finally exited the park, Nick went to get the car. Leni alerted again just before he picked me up, so I took some more of my emergency meds. At that point, I was very shakey, blacking out, developing some muscle weakness, short of breath, getting a rash, and feeling a bit nauseas. Thankfully, the 2nd dose of my meds seemed to kick in quickly. That along with the air conditioning in the car and being able to lean back some gave my body the chance to recover. This had the potential to be a BAD reaction. Without Leni's alert before my initial symptoms, this very easily could have needed an epi pen and we would have spent the rest of the afternoon checking out the local ER. With her alerts, we were able to stay just ahead of my symptoms and manage them. Yes, I still was symptomatic; yes, we still had to leave the zoo early, but Leni did her job and that kept me from needing an epi pen, out of anaphylaxis, and out of the ER. That's a win in our book!


Anyway, along with her alert training, we do all sorts of other training, too. We do some body awareness training which works on her being aware of where her hind end is in relation to her front legs and where she is in relation to me. This allows us to work in tune with each other when we are in stores so we can avoid being in the way of other shoppers. We work on her moving closer to me on command if she moves away for whatever reason. She has a couple commands that allow us to take up as little extra space as possible in the case of crowds, such as lying between my legs instead of to the side or tucking behind me against a wall instead of in front.

We also work on some of her specific tasks that she does for me. She brings me my medications on command if I can't get them myself. She can "find my phone" if I pass out somewhere or can't leave the bathroom and don't have my phone with me. We are working on her still bringing it to me even if someone calls and it starts vibrating...who knew she didn't like a vibrating phone in her mouth =P She can bring me a bottle of water from our fridge upstairs, but we're still working on her closing the door after she gets the water out...this has been a surprisingly long process. She loves to close doors so why closing the refrigerator is so challenging is beyond me. We think she and Bonk are in cahoots and this is a subtle way of giving Bonk access to the food...stay tuned =P

And, of course, we play! I've taught Leni to balance on my bosu ball which she absolutely loves. She can do just two feet or all four, plus she can do sit to stands on the bosu. What a balanced dog! =) Sometimes I'll walk in the room and she'll run over to the bosu just to play. I've taught her to weave through my legs and do figure 8's. We're working on high-5's and catching a ball =P She loves tunnels and jumps and climbing on things, so we'd love to do agility sometime but unfortunately there's no where around here to do it =(

So that's what's up with the Leni Bean! She is such a great addition to our family, and I am so thankful for her. She has given me just a bit more control over my completely uncontrollable mast cell disease, and we are so thankful for that. Even though it doesn't cure my mast cell disease or even really resolve my symptoms, just having some warning and being able to prepare slightly more has really given all of us some more peace of mind and me a bit more confidence to go out and do things, like going to the zoo this past weekend. Plus, having a goofy dog around in between throwing up and passing out just helps bring some smiles to the roughest days.

Tuesday, May 24, 2016

How to Smile Guide for Rough Days

Living with a chronic illness means that we try to take advantage of the times that I do feel good because we never know when those moments will come or how long they will last. I try to find a reason to smile every day even when it's through the tears, but some days, I just need some help. Last Friday was one of those days.

Friday was a day where my brain had all sorts of aspirations of being productive, but my mast cells cried mutiny. Those are some of the hardest days because I feel the tension in my own body of desperately wanting to be able to do things, but to be physically unable. Nick called me on his way home from work, and I said I just needed a reason to smile.

Not long after that, I got a text with the comment, "It's got the munchies!" and this picture:


I had NO idea where he was going with that especially when his next text said, "I hope you like triangles!"

He gets home and hands me a bag of moss and sand from Home Depot. I'm laughing as I open the bag because it was so random. He said that I never said it had to make sense, just that it had to make me smile. He got me there =P

The next bag had a new pack of markers for my coloring books and Tri-ominos. It's a domino-like game that was super fun, except for the fact that Nick beat me by 7 points in the final moments of the game after I was ahead by over 300 points for a while.

Anyway, at this point I was smiling and laughing because Nick had done such a great job making me smile and laugh on what had been an otherwise really rough day. But then he pulled out the last bag that he had kept hidden.


Yes, those are my very own Venus Fly Traps!!! Not sure why I'm so fascinated with these, but there is something very cool about having carnivorous plants. Although the instructions do specifically say not to feed them meat...So the moss and sand that previously seemed random were actually for my new plants. Plus he got me a bright green pot to plant them it.

We spent the rest of our evening planting the Venus Fly Traps and playing Tri-ominos which I came so close to winning as I mentioned above. Then we facetimed while I took some meds and got into bed and Nick went downstairs to make dinner.

What had been a really rough day was turned around, and I was able to go to bed encouraged and smiling instead of hung up on my discouragement and frustration. Husbands (or wives/parents/etc.) are the unsung heroes of chronic illness. Nick deals with my mast cell disease on a daily basis, just like I do. And the reality is that there is often nothing he can do to make my symptoms go away. That is its own world of hard for someone you love to watch you be in pain and sick and be unable to help. Thank you to all family members who walk this rough road of chronic illness with us every day!

We are so thankful for you! Know that every little thing you do for us does not go un-noticed. Thank you for helping us smile and laugh on days that seem too hard to face on our own. We could not do this without you!

Friday, May 20, 2016

GI and Endocrine Update

It's been a long week. I had 2 follow-up appointments and there was some good and bad in both.

On Tuesday I saw my new GI doctor at the Cleveland Clinic. I saw him for the first time at the beginning of April. At the end of April, I had an endoscopy where they changed my feeding tube, took some biopsies, and did an endoscopic ultrasound of my stomach and intestinal lining and pancreas. We also did a good bit of blood work. Some of the results have been trickling back in, and I got a call from his office to schedule a follow-up as soon as I could.

Because I am still showing some neurological issues with no really cause, my GI doctor felt that there was still the potential to be some mitochondrial involvement and ordered some blood work that would give an indication either way. This is not the first time that mitochondrial disease has been mentioned, but it is the first time that we now have some test results that might point toward that rather than just speculation. I have put in paperwork to be seen at the Clinic by the mitochondrial specialist, so hopefully we will hear back from him at some point.

We also discussed the results from the biopsies that were taken during the endoscopy. The stomach biopsies show no indication of fibrosis, which is very good! They did show chronic gastric inflammation. Basically my doctor says the biopsies indicate that my stomach is irritated on a regular basis...oh really?? I had no idea...yeah, we both got a good laugh out of that =P The last thing the biopsies showed which is really good news is that the Xolair appears to be working! When I first had stomach and intestinal biopsies done looking for mast cells, I had an average of 68 mast cells per high powered field (hpf). Normal is considered below 20 mast cells/hpf. While I did have 2 samples showing over 100 mast cells, the average was 47 mast cells/hpf! Still more than "normal," but a good step in the right direction!

We also discussed some of the issues that were noted with my pancreas during the endoscopic ultrasound. I have been loosely diagnosed with chronic pancreatitis multiple times mostly because the ER had no other explanation for my symptoms. However, it appears that they might not have been too far off as there was pretty significant abnormalities noted throughout my pancreas during the scope. Chronic pancreatitis is a loose diagnosis anytime, and with all my other issues, this is more likely related to mast cell stuff. Unfortunately, this may mean that my sugars may not stabilize once I am off tube feeds like we hoped since it appears that there are actually issues with my pancreas. We are also discussing possibly needing to change the dose of my digestive enzymes that I take with food as I have been having increasing issues digesting. Since I already had an appointment scheduled with my endocrinologist for Thursday, we put any actual changes on hold until I talked with her.

So I saw her yesterday. The first thing we talked about was the new medication she put me on for my blood sugars. To make a long story short, we don't really know if the medication or Leni was helping me the most over the past few weeks, and since I have been having pretty awful side effects we decided to stop the medication. So thankful for that because the past month that we have been trying it have been ROUGH. For the first few weeks we didn't know why I was having these weird-for-me symptoms. It was only about a week ago when we connected the pieces and realized that my increase in symptoms came right about when I started the medication. Good and bad. Good because hopefully when I stop taking the med, these symptoms will leave. Bad because it will likely take almost a month for it to fully get out of my body...so I have to deal with potentially another month of these symptoms...

The next thing we talked about is my ongoing blood sugar issues. Because I am continuing to have these low sugars, and some previous testing was borderline abnormal/inconclusive, she feels that we need to do some more testing to make sure we're not missing something more serious. Anyone remember the Cortisol Stimulation Test I wrote about back in March? To summarize for anyone new to the blog...it caused me to go into anaphylaxis...since that was one of the borderline tests...yep, you guessed it...I have to re-do it =\ We're going to try a low dose of the typical stim test with the hopes that since it will be significantly less than the first dose, I might not react. Or at least if I do react, it will be not quite as severe a reaction.

You could say I'm a bit less than thrilled that I have to do this again. In fact, I'm actually legit scared. I hate anaphylaxis (in case anyone was wondering =P). Every time is terrifying, doesn't matter how many times it has happened. The "sense of doom" that is a symptom of progressing anaphylaxis is very real and very scary. It's one thing when anaphylaxis comes out of no where, it's another completely to knowingly enter a situation that  has the potential to cause a severe reaction. I wouldn't have agreed to do this test again if my doctor didn't feel it was the best chance at making sure we're not giving me an incorrect diagnosis or missing something important.

We're doing everything we can to make sure things go more smoothly. We scheduled the repeat test on a day when the doctor that was in the infusion center the first time is working again. My doctor is in the office that day (one floor above the infusion center) and will be available if any issues arise. I have a friend "on call" to come get me should I have a reaction and be unable to drive home. All I can do now is wait 2 weeks, and start praying now =)

So the good is that we got some answers, are moving in the right direction, and I have 2 doctors who care. The bad is that we are still left with more unanswered questions than we would like. And like I feel like has been the case for so long, we're left praying. Praying that the repeat Cortisol Stim Test goes smoothly with no anaphylaxis. Praying that the medication gets out of my system quickly and I get relief from these symptoms. Praying that the adjustments we make to my current GI medications resolve the issues I have been having with few side effects. Praying that the mitochondrial doctor will agree to see me (sometime this century preferably) and that he will have some insight to my ongoing issues. Praying that despite all this, I can hold onto joy and not get discouraged with the lack of answers.

I am still so thankful to finally have a team of doctors who care and are willing to work with me to figure things out. It was not that long ago that I was still fighting for doctors to believe me. It is so incredible to be able to leave appointments with my doctors doing everything they can to help me and sort through my weird, unrelenting symptoms. Unfortunately, the reality of living with a rare disease is that even when doctors do care and want to help, there may be little they can actually do because so much is still unknown.

As always, thank you for your prayers! The last few weeks have been tough mentally. I am stuck in this weird in-between state seeing how far I have come from where I was in January, but still very far from being able to function "normally." As I see improvement with my symptoms, it is almost even more difficult to handle the set backs as I am getting glimpses of where I want to be. And with the recent appearance of these new-to-me symptoms that have been much more uncomfortable than what I am used to, I have really been struggling to hold onto joy and not let my discouragement run rampant.

Please continue praying for wisdom for my doctors as they are considering my care and wisdom for us as we are making decisions. Pray that nothing will go to waste, the appointments that need to be scheduled will happen and that those that would not be good will not be. Obviously, please be praying the cortisol test goes smoothly and we get the answers we need. And most of all, please pray for some spiritual encouragement. These past few weeks have knocked me down both physically and spiritually. Some days I just feel as though I am crumbling under the weight of everything, and that is not me. Please pray that I am able to continue to find joy and peace in the midst of whatever may be going on physically.

And THANK YOU. During the past few weeks, I have struggled to pray. I have tried, but the tears come before any thoughts or words. It is during these moments that I truly rest on your prayers. I believe God is good. I believe He is sovereign. I trust that no matter what I go through, He can use it for His glory. I know I am right where He wants me. And I am okay with that. But that doesn't change the fact that sometimes the weight of this world feels crushing. When this life is more than I can handle, thank you for coming alongside me. When I feel like I can't look up, thank you for shining God's light to me. I know a lot of people struggle to pray because it feels like their words go out and answers are few and far between. Please know that your prayers are not going unanswered. Thank you for being a part of my life through prayer and that your part is not going unnoticed.

I still believe that God is and will continue to bring about VICTORY in my life this year. Thank you for coming with me and being a part of what God is doing. That VICTORY is being brought about through your prayers and support. This is not just a blog of my struggle with mast cell disease. This is a testimony of how God can use anyone and anything for His glory.

You know the phrase that used to play before (after?) certain TV shows years ago..."This program was made possible by viewers like you?" Here's what I think mine would say, "This life is made powerful by prayer warriors like you." God isn't finished with me yet. And He is using your prayers and support to encourage me and lift me up when I have fallen. Thank you.

Tuesday, May 17, 2016

#besidesmydiagnosis

One of the things that happens with the onset of a chronic illness as a teenager or young adult is that life changes. Our ability to function normally is gone, and we have to learn to adjust to our "new normal." For some people it might not be a huge transition, for others, the change could be much more drastic. In my case, I went from being a college athlete to being almost unable to walk and went from eating normally to being primarily tube fed for over a year...both were pretty major changes.

Sometimes is can be hard to look past everything we feel we have lost to remember who we are. We all identify to some extent with the things we do. I am a PhD student, I am an athlete, etc. When those things disappear, it can be hard to remember that we're still the same person, just with some different circumstances. We spend so much time at doctors appointments and keeping up with treatments and doing our best to keep our head above water that we get lost in our diagnosis. Our conversations with friends and family are often reduced to how we are feeling and what the latest news is from the doctors. That's not necessarily a bad thing. I so appreciate all the prayers and support, and I have no problem keeping people updated and sharing our struggles and triumphs. That's one of the main reasons I've been keeping this blog.

But sometimes, it can still be hard to remember who I am apart from having mast cell disease. That diagnosis didn't change who I am, who God created me to be, it just changed HOW I might have to do things. It is a PART of who I am, not who I am. Yes, it has changed my life. No, it has not changed me.

Another blogger started the hashtag #besidesmydiagnosis for all the chronic illness patients to be reminded that we are not our diagnoses. We are so much more than the acronyms and labels the medical community has tacked onto our charts. We are more than the long list of medications and conditions that we recite weekly at appointments to new nurses or doctors. There is so much more to us besides our diagnoses.

1.  #besidesmydiagnosis the three things about my appearance that I love in the mirror?


I like my green eyes, my hair (despite how long it takes me to make the decision to cut it or keep growing it out), and the fact that most of the time I'm in sweats and don't care much about clothes =)

2. #besidesmydiagnosis the things I have read most are?

I used to LOVE reading fictional horse series, Saddle Club, Thoroughbred, High Hurdles, etc. Every now and again I'll go back and read some of them again as a great throw back.

3. #besidesmydiagnosis my favorite comfort foods are?

apples, PB2, pretty much all fruit, hopefully one day popcorn again

4. #besidesmydiagnosis my favorite past times are?

Sports! Running, kayaking, biking, swimming, hiking, etc. Watercolor painting, adult coloring books, training my dogs, reading (although I don't read as much these days...have to get back to that!)

5. #besidesmydiagnosis my biggest accomplishment since illness is?

Finishing my Master's, hands down. I hated every moment of the program, worked harder than I had ever worked for classes I didn't understand at the beginning of the semester and still didn't understand at the end, and almost quit multiple times. But I didn't, and when I received my diploma, I was so glad I hadn't. 

6. #besidesmydiagnosis I feel my best quality is?

If stubbornness can be positive (maybe perseverance/determination), probably that. Otherwise my ability to make Nick smile just by looking at him =)

7. #besidesmydiagnosis my motto/mantra to live by?

Those who wait on the Lord shall renew their strength. He will raise them on wings like eagles. They will run and not grow weary; they will walk and not faint.
Isaiah 40:31

8. #besidesmydiagnosis I would love to travel to?

Alaska (again), Belize, Costa Rica (again), Machu Picchu in Peru, Galapagos Islands in Ecuador, Iceland

9. #besidesmydiagnosis my guilty pleasure?

Rereading books and rewatching movies! It drives Nick nuts, but I love to read or see something and know what is going to happen.

10. #besidesmydiagnosis I have many dreams and ambitions such as?

Finishing my PhD and running my first 10k are at the top of my list right now!

If you're another blogger (or vlogger) with a chronic illness, it's your turn! Check out the original #besidesmydiagnosis post here, and post yours!

Wednesday, May 11, 2016

Why I'm Speaking Out

I was recently looking on the website of the local medical school and was caught off guard. I don't expect most doctors to be familiar with mast cell disease. It's still not well understood and while it is likely to be under diagnosed, can still be considered a rare disease. We had to travel to Minnesota to get a diagnosis. I understand that it is not a commonly seen condition.

Somehow, though, I think I still held onto the belief in the back of my mind that in 5, 10 years, that would change. In another decade, more and more research would come out about mast cell mechanisms and treatment would be more straightforward and targeted based on specific symptom patterns. At least I was hoping...

But when I was looking at the medical school academic departments, I had a moment where I felt my hope in the medical community begin to crumble (yet again...). There were 17 major academic departments and course work tracts that all the medical students (i.e. future doctors) had to go through. Allergy was not one of them...Immunology was not one of them...Hematology was not one of them...

While I'm sure that all the students do have to take course work that covers allergy, immunology, and hematology, the fact that NONE of the possible categories that mast cell disease could be classified in has a focused multi-course plan of study is not encouraging for future research.

Right now, mast cell diseases are so poorly understood that doctors cannot even agree how to classify them. Are they solely allergic reactions and should be treated by an allergist? The lack of IgE mediated pathways would indicate that they are not, however, the resolution of symptoms with the use of an epi pen and the known involvement of mast cells in allergies would argue that they might be... Maybe they are immunological and should be treated as immune conditions? Except mast cell activity doesn't necessarily follow familiar immune pathways and are not specifically responsible for keeping the body safe from foreign invasions, but at the same time, many patients see considerable improvement with immunological treatments such as Xolair which targets these immune pathways...Should they be lumped into hematology and considered a blood disorder? Mast cells are produced in the bone marrow and some forms are characterized by the over production of mast cells by the marrow, yet other forms have nothing to do with over production in the blood itself and instead involve mast cell hyperactivity at the organ locations throughout the body...See how this is confusing??

If doctors now cannot agree on how to even categorize these conditions, and the future of the medical community spends a semester at most for each allergy, immunology, and hematology, how can I begin to hope that research will progress toward better treatments? It seems that without more education of the medical professionals, the only hope that we may have in the next decade is to get a better classification system of these conditions.

The specialists in this field are doing research, but how long can we (the mast cell community) expect them to continue to pursue new research? These doctors that invest in our care are not just doctors of rare disease patients. They are fathers, mothers, husbands, wives. They have families and more to go home to at the end of each very long day than just journal articles and research data. How long can we expect them to sacrifice their lives for ours? They sacrifice time with family and friends to collect research data in hopes of finding a breakthrough in a little understood field and hoping for answers before their funding runs out.

These doctors are our lifeline in a medical community that does not understand us. What are we going to do when these doctors are no longer practicing? If the future of mast cell patients is based on the current medical students, then we need to speak up and raise awareness NOW. I don't want to be in the same place in 10 years that I am in now. I don't want future generations of mast cell patients to have to go through an 8 year journey to a diagnosis because mast cell disease is still not understood any better than it is now. I understand that just because people know about something doesn't necessarily mean we will have a cure or even better treatment options. But I do know that if people aren't aware of mast cell diseases, then there is definitely no advancement in this area of medicine.

To be honest, I don't know what I can do. I don't know that there really is much that I CAN do. But I do know, that I have to do SOMETHING. If all that I can do is to speak up about living with mast cell disease, then that's what I'll do. If me being open about my life with mast cell disease means that one person gets an earlier diagnosis or some medical student remembers hearing my story 7 years later when they get a patient with weird, unexplained symptoms, then I'm not going to stop sharing.

I wouldn't have chosen this as how I wanted my life to go. But I didn't get that choice. I DO however, get the choice of how I am going to respond. I'm going to share my journey with mast cell disease so that hopefully others don't go through the years of misdiagnosis and frustration that my family dealt with.

Here's how you, family and friends, can help. Please share with medical professionals, students, insurance companies, anyone in the medical field. This is really the front line for getting awareness for these conditions. As knowledge and understanding spreads throughout the medical community, living with these conditions will become less of a battle and hopefully more manageable.

I don't want the next generation of mast cell patients to have to struggle through the same challenges I have. Eight years until a diagnosis is WAY too long. Years until an actual effective treatment is identified is UNACCEPTABLE. I know I can't change the medical community overnight, but if we don't start speaking up now, it's that much longer until change does happen. 

Those of us living with mast cell diseases are not sharing our lives because we want to but more because we HAVE to. If we're not willing to speak up about living with these conditions, who is going to? Here's what mast cell disease patients have to say about why we're sharing our lives with mast cell disease:

I'm speaking out about mast cell disease so that the medical community begins to recognize the disease and believe patients, and so patients can finally receive much needed treatments.
  • Deanna from Ohio living with malignant idiopathic anaphylaxis, mast cell activation syndrome, idiopathic angioedema and urticaria
I'm speaking out about mast cell disease so people will understand that even though I am not technically allergic to anything, normal "healthy" foods stand a good chance of sending me into shock.
  • Kathy from Oklahoma living with mast cell activation syndrome
I'm speaking out about mast cell disease so that I can heighten awareness for those whose suffering is undiagnosed.
  • Melissa from Minnesota living with mast cell activation syndrome
I'm speaking out about mast cell disease so that no one suffers in silence.
  • Rena from New Jersey living with mast cell activation syndrome
I'm speaking out about mast cell disease so that others don't have to wait 6 years for a diagnosis.
  • Emberley from Ohio living with dermographia and suspected mastocytosis
I'm speaking out about mast cell disease so that people can understand how this invisible illness has changed the lives of the people that have it and hopefully understand the disease one day.
  • Lisa from New York living with mast cell activation syndrome
I'm speaking out about mast cell disease because I want to be around for my daughter. With the little research and funding we have, there are not enough informed medical professionals to treat this illness nor its symptoms. In the meantime, I am afraid my daughter will not have her mommy around as long as necessary.
  • Angela from Colorado living with systemic mastocytosis
I'm speaking out about mast cell disease so that maybe one day, I or anyone else won't be told "there's nothing wrong with you" or "it's all in your head" and that maybe, just maybe, insurance companies will NOT deny the medicine we need because they don't understand how very much we DO need the medicine. Also, so the FDA would get on board and approve drugs such as compounded ketotifen.
  • Maureen from New Jersey living with systemic mast cell activation disease
I'm speaking out about mast cell disease with the hope that funding, education, and research will increase. I hope that one day, I will not struggle with the unpredictability and invisible symptoms daily.
  • Alison from North Dakota living with urticaria pigmentosa and systematic mastocytosis
I'm speaking out about mast cell diseases so that more research will be undertaken to identify the bio-markers associated with these conditions, which, in turn, will shorten the time it takes for patients to be diagnosed.
  • Anonymous
I'm speaking out about mast cell diseases for research, education for the medical world as well as educating our communities to raise awareness, funding to help families, and ultimately find a cure for our children and adults around the world.
  • Lisa on behalf of her daughter who was diagnosed at 13 years old
I'm speaking out about mast cell disease so others will know that they're not alone.
  • Anonymous
I'm speaking out about mast cell disease in hopes that doctors and family members will understand that we did not choose this disease, we did not choose to be sick, and we suffer greatly every day. To doctors: we are human beings with feelings not just lab specimens. We are sick people, not criminals.
  • Anonymous
I'm speaking out about mast cell disease because I have lost faith with western medicine, and I really believe that mast cell patients know more about this disease than most medical practitioners.
  • Elaine
I'm speaking out about mast cell disease so that others will not have to suffer a lifetime with a long list of unexplained symptoms. It is painful to be told that there is no medical reason behind your symptoms.
  • Lori
I'm speaking out about mast cell disease to let others know YOU ARE NOT ALONE AND YOU ARE NOT CRAZY!
  • Michelle from Oregon living with TMEP
I'm speaking out about mast cell disease so that people know what it is and don't just shrug it off in emergencies.
  • Anonymous
I'm speaking out about mast cell disease to raise awareness so that no one has to fight this disease alone.
  • Abigail from South Carolina living with mast cell activation syndrome
I'm speaking out about mast cell disease in hopes to make enough people aware including the medical profession that just because we don't fit what you learned in a textbook, doesn't mean it doesn't exist.
  • Rose from Missouri living with mast cell activation disorder

We don't fit in textbooks right now, but that doesn't mean we don't exist. Textbooks are rewritten every year, sometimes just so students have to buy the new edition. Maybe with us speaking out, one day, those new editions will include more extensive mast cell disease information that will lead to a better understanding within the medical community, shorter time to diagnosis, and ultimately more effective treatments or even cures.

I'm speaking out about mast cell disease because while I didn't get to choose whether or not I would GET mast cell disease, I can choose HOW I will live with it. For me, that means sharing my story in hopes that it helps at least one person either to a diagnosis, encouragement during a rough period in living with this condition, or just giving hope that they are not alone. Regardless of the reason, I'm speaking out.

We're speaking out.


Monday, May 9, 2016

Food Allergy Awareness Week

Today is the start of Food Allergy Awareness Week! What are you allergic to?

Seriously, approximately 15 million Americans have at least one food allergy, and many have multiple allergies. Eight foods (or food sources) account for 90% of all food allergies: milk, peanuts, tree nuts, wheat/gluten, soy, eggs, fish, and shellfish. My guess is that everyone reading this blog knows at least two people with food allergies (the first would be me =P and you probably know someone else, too!).

Has anyone seen the new commercials on TV for epi pens? It is filmed from the perspective of a girl with an allergy to peanuts. The commercial shows her getting hives and a rash and swelling as her friends make sure there were no nuts in the brownies only to find out there was peanut butter. At the end of the commercial, she is presumably passing out as her field of vision shrinks and you hear her friends shouting to call 911 and apologizing to her for forgetting her allergy.

It is well done. As someone who has experienced anaphylaxis from food, it is almost too well done. Every time I see it on TV, I almost want to cringe and look away, because I know the feeling of panic that comes when I realize I accidentally had some milk. I know what it is like to feel my throat closing and like everything is fading out. Thankfully, I also know what it is like to feel epinephrine kick in within 2 minutes of using the epi pen and to feel myself be able to take a breath again and refocus on the world.

Just like in the commercial where they confirmed there were no nuts in the brownies, but no one thought to specify a nut butter, people often assume that a food request is just a preference rather than life-or-death. Never be afraid to ask seemingly repetitive questions to make sure. If you ask if the brownies have nuts, also ask if there is any nut butter, peanut butter chips, peanut m&ms, etc. Make sure whoever you are asking realize it is because you have a life threatening allergy, not because you're picky or on the latest fad diet. It is WAY more inconvenient to make someone triple check that your food is safe than for them to have to call 911 because you didn't want to be a bother.

I've been living with food allergies for almost 10 years now. I am allergic to milk, wheat, and soy and have dealt with other food sensitivities over the years. My milk allergy is by far the worst and I can go into anaphylaxis from very small amounts of even a milk residue. I read labels of every food I buy, even products that I have had before (learned that the hard way...). I have gotten used to double and triple checking my food in restaurants. I am so sensitive to milk that my husband and I use separate dishes so there is no chance of any residue being left behind (learned that the hard way, too...). I know to check whether any other forms of milk (butter, cheese, lactose, casein, whey, etc.) are hidden in the food I may be served somewhere. Yet even with my experience, how careful I am, and all the safeguards in place, things can still happen.

Just this past week, I was at a local coffee shop. I had been there many times before and knew they had safe almond milk. I am *slightly* (cue my husband laughing...) indecisive so I let the person behind me order first. I watched the barista make his drink and decided that what he ordered sounded good. I ordered the same thing, but again confirmed they had almond milk and it was a brand I knew was safe. I paid and watched as the barista made my drink. Everything seemed fine until the very end where she grabbed a spoon off the counter to mix my drink...the same spoon she had used to mix the previous drink which appeared to have milk in it. I immediately asked if she did, in fact, use the same spoon and if there had been milk in the previous drink. She said yes and looked slightly confused and told me that she had used almond milk in my drink. It wasn't until I explained that I was severely allergic to milk and that even the bit left on the spoon from the previous drink was enough to trigger anaphylaxis that she got it. She apologized multiple times and remade my drink, so it ended up okay...this time...

I am so thankful that things ended well, but it could have ended very differently. Had I not let the person behind me order first, I might not have seen her mix the drink and could have reacted to milk from another drink made before I even arrived at the coffee shop. Had I not watched her make the other person's drink and seen her use the spoon, it might not have occurred to me to ask if the spoon had been used before. Had I not been watching my drink being made, I never would have seen that same spoon used again. And potentially worst of all, had I been too afraid to be an inconvenience that I assumed that little bit of milk would be okay, I would have put myself in a life threatening situation by my own choice.
\
The commercial is chilling in a good way. It does a good job of portraying what anaphylaxis can actually look like and how it can happen even when the people you are with know about your allergy. You are your own best advocate. Anaphylaxis is scary. It is life threatening. It doesn't matter how many times I have had to deal with a severe reaction, it never gets easier. Feeling my throat closing, having trouble breathing, being on the verge of passing out and unable to communicate...it is NOT worth your life, anyone's life, to risk being an inconvenience.

If you live with food allergies:
  • Don't be afraid to speak up
  • Don't be afraid to confirm and reconfirm your food/drink is safe
  • Don't go anywhere without your epi pen
  • And NEVER be afraid to use it

Saturday, May 7, 2016

Awareness on YouTube!

I posted a video on the Buckeye Service Dog page on facebook earlier this week, and while I thought that group was private, it appears that it's actually public. So many of you have already seen this, but if not, here it is!

Check out Living with Leni and Mastocytosis* on youtube!


A journalism student at Kent State had a video project for one of her classes and thought service dogs would be an interesting topic. She had emailed Christy (the owner of Buckeye Service Dogs) and asked if she knew any service dog teams in the Kent area who would be interested/willing in being interviewed for her project. Christi had emailed me, and we did the interview and filming a little over a week ago.

*A couple of technical errors for full disclosure:
  • I have mast cell activation syndrome (MCAS), not mastocytosis. Both are forms of mast cell disease, but are physiologically different.
  • Also, I was diagnosed with MCAS a year and a half ago, not 10 years, but I HAVE had symptoms for almost 10 years.
Despite the minor errors, it's still great awareness for mast cell disease, service dogs, and how Leni really makes a difference for me! Feel free to share and enjoy!

Wednesday, May 4, 2016

Xolair...Love or Hate...

So I know you've read a few of my posts talking about how Xolair has been helping my symptoms. And it still is! At least we hope...

Despite the fact that Xolair has been making great improvements in my overall health, I still dread injection day. And the next day...and potentially the next day...still not sure about that yet.

First round of Xolair we didn't know what to expect, just that I probably wouldn't feel good. Guess what? We were right...

BUT, if you remember reading my first Xolair Update, then you'll remember that after about 3 days of flu-like symptoms and really feeling rough, I started feeling better than I had in a long time. We were excited to see that we had potentially found a treatment that might really make a difference for me.

About a week before the second round of injections, it seemed that I was having a reappearance of my symptoms. We had 2 ER trips in less than a week, including full lights and sirens ambulance rides, one from home and one from work. Somehow once things start improving, it feels like an even farther fall down when I'm not feeling well. Good that my baseline is getting better, but it makes the rough days feel even worse.

Second round of Xolair was scheduled with the hopes that with each round of injections, the side effects would become less and less while the stabilizing effects on my mast cells would continue to manage my symptoms.

Day 2 post-second round of Xolair injections I actually had some hope that the side effects were not going to be as bad. Then the immunosuppressive part of Xolair began to rear its ugly head...the norovirus happened to be going around northeast Ohio right about the same time that I got this second round of injections...let's just say that Xolair side effects + norovirus + mast cell disease = the famous line from The Incredibles...not happy, Bob, not happy...

Two weeks later, I finally felt like some semblance of whatever this crazy life that Nick and I call normal was finally beginning to emerge again. So, I lost 2 weeks of Xolair Month 2, but was able to enjoy the next couple of weeks and feel the benefits of the injections again. I got to spend one of those weeks in Virginia with my family, and it was such a gift to be able to feel relatively healthy to spend time with them.

We made the decision to delay Xolair injection #3 because I had a GI procedure scheduled for the Tuesday after we got back. We felt (and my doctor agreed) that it would be better not to mix the issues that I have with anesthesia along with the side effects of the injections. Did we make the right choice?? Guess we'll never know...

Thankfully I came through the tube change and endoscopy with little to no issues! Best experience so far dealing with anesthesia. Unfortunately, by Friday the coughing that had started the week before (while still in VA) apparently turned into bronchitis. That along with my normal GI issues that sometimes like to surface at the most inopportune times set the stage nicely for a wonderfully convenient ER trip (insert sarcasm here) that at least allowed us to visit our favorite local ER (yes, we do have favorites =P) at a time we hadn't been before...now we can check off mid-morning Sunday off our not-yet-been-to-the-ER-at-this-time-yet list.

I saw my doctor on Monday (great opportunity for post-ER follow-up) for the next Xolair injections, and he agreed to go ahead with round 3 even despite the prior week of non-typical-for-me symptoms. Fast forward about 30 minutes post-injections and I was feeling the normal post-Xolair malaise that I have come to expect as normal.

Yesterday morning I felt about how I expected. I fought off a more severe reaction all day (thank you, Leni, for alerting and keeping me one step ahead of the reactions!) and was very thankful to be able to crash in bed after work with my two favorite black fluffs to keep me company.

Last night was marked by little sleep and me re-learning the intricate patterns on the tile in our bathroom (cause I didn't know them well enough by now...). Today has been more of the same...Leni, Bonk, and I are having a camp-in while enjoying the nice Ohio weather through the windows in the bedroom with brief interludes in the bathroom.

The hopes that Xolair side effects become less with each round of injections have been pushed back another month...stay tuned...

So the question that I posed in the title...do I love or hate these Xolair injections?

Yes...