May the pollen count be ever in your favor

Hello All!

It is now mid-May, which is insane as it only just stopped snowing in Vermont. I love spring. The sun returns, the warmth returns (hopefully, I’m still waiting this year), the smells return, and the color returns. I always feel starved for color around this time of year and, when it finally returns, I can’t get enough of it. I feel like a dehydrated person stumbling upon water, except that I am thirsty for spring colors. The spring smells are also so intoxicating. Everything smells so fresh and new. It is just such a magical time of year.

However, the other thing that returns is pollen and allergy season. I’ve been breathing like the asthmatic that I am and struggling. But, that’s just a blip, and it is worth it. I’ve been wearing my Vogmask as much as I can when I’m out and about, and it has been helping a ton. If you have respiratory allergy reactions, I highly recommend you check these masks out…..plus they are pretty.

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Rocking my Vogmask….but really I just wanted to show you how wonderful Tom is at pushing me around in my wheelchair even though he has to stoop to do so.

I’m sorry to say that this post is not a fun post. I feel like Lemony Snicket saying, “Do not read this. Everything goes wrong and everyone is unhappy.” However, his books are usually funny and entertaining, but my post is mostly a medical update with loads of actual bad news. I promise to try to make it better with pretty pictures and maybe a happier post soon. Dun Dun….DOOOOOOM……not really….but really….but also not really.

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I reached up out of my chair and blindly took this picture…it came out ok 🙂

Where to start, things have remained pretty much the same over the last month or so. I have had improvement, especially on IV days and the day after. I am very malnourished at this point from 5 months of not being able to eat and mostly surviving on baby food and berries. The doctor makes up the bag each time I go in, depending on my symptoms. Usually the IV includes some combo of magnesium sulfate, glutathione, B complex, B12, B5, and high dose Vit C. I have definitely seen an increase in energy after the IVs and a reduction in my constant headache. I also have less of the constant dehydration symptoms for a day or so after. Unfortunately, my insurance only pays for one a week, so I am only getting weekly infusions. I’m so grateful for this treatment.

My nausea has continued to be bad, and I’ve been having increasing stomach and intestinal pain. I am being referred to a GI doctor, but that will probably take several months to get into. From my symptoms, as well as my continued drastic weight loss, the doctors are thinking that I potentially have gastroparesis. Gastroparesis is a disorder where your stomach and intestines don’t contract and push things through your GI tract correctly. It also means you don’t digest food or absorb nutrients correctly. It is fairly common with Ehlers-Danlos Syndrome patients, as well as ME/CFS. We are hoping to get a rush on the GI doctor because I’m down to my middle school weigh (which, granted, wasn’t that tiny, but is 25 pounds lighter than 4 months ago) and would rather not lose too much more. I have a hypothyroid issue, so when my body losses weight, you know something is going on.

A few weeks ago, my primary care doctor gave me a 24 hr Holter Monitor test, which essentially monitors your heart rate, while allowing you to put markers in the test of when you feel specific heart-related symptoms. The last few months, I’ve been dealing with increased heart rate upon sitting and standing. I often feel like my heart is pounding (not racing) and I feel like I’m being startled all the time. Also, I feel like my heart forgets to beat once in a while or gets the hiccups. I often wake up with the feeling that I had an electric shock through my body coming from my heart. Unfortunately, during the 24 hours of testing, I didn’t have any severe episodes like I had been experiencing the entire week before the test. It was sort of one of those classic “the car makes a terrible noise other than the hour you bring it to the mechanic” situations.

However, my results weren’t completely normal. The nurse from my primary care office phoned and told us that the results came out, “Ok, other than some Bradycardia issues.” Bradycardia is a condition where someone has a low heart rate. Sometimes this is seen as an ok thing because very athletic people can have low heart rates. However, when I got the test report, it said I had 18 hours (in the 24hr test period) of Bradycardia and my heart rate dropped down to 36 bpm for 25 minutes straight and then an hour later jumped up to 121 bpm (Tachycardia, which is where the heart beats too fast). Both of these extremes happened while I was sleeping. So this led my doctor to refer me to a cardiologist.

I showed my results to three different doctors that I saw that week for other things, and they all said that this wasn’t a “slight issue,” but actually a significant finding and needed to be looked into pronto. One said that a really fit person often has a lower heart rate, but rarely down to 36 bpm. But the fact that I’m so incredibly de-conditioned makes it especially worrisome. 36 bpm is like Lance Armstrong territory.

That brings me up to more current affairs. Last Thursday, I had my brain MRI. This brought my total MRI count up to 18. I asked when my “get one free” came into effect, and the MRI staff agreed that I need a punch card. I was incredibly stressed about the MRI. For one thing,  I had to wheel all the way through the hospital, which has florescent lights, lots of people, people who wear perfume, lots of toxic cleaning supply smells, and other weird scents…all of which are seizure triggers. (I don’t understand why people think its ok to wear perfume at all, let alone in a hospital setting.)  Thank God for my Vogmask (gosh, I feel like an infomercial).

By the time I got to the MRI unit, I felt like I was going to pass-out and have a seizure. Luckily, they were ready for me right when I got there, and I got changed and into the MRI tube. I was also incredibly stressed because MRIs tend to make me really nauseous and dizzy and, more recently, loud noises can set off seizures. For those who don’t know, MRIs are freaking deafening and really obnoxious. Luckily, the MRI was on the shorter side (25 minutes) and I only blacked out a few times due to the noise, but no seizures or vomiting. I did lose the function of my hands after the exam,  so I needed my mom’s help getting dressed and resituated in my wheelchair. Luckily, that only lasted 15 minutes or so and, once I was back in the car, in a reclined position, and had fluids, I started feeling a bit better.

This Monday, I had my IV for the week and then headed to my apartment for the night because on Tuesday I had to be up early for my disability case hearing before the judge at the Burlington Federal Building. I started getting intense sinus pain and congestion as Monday wore on, but I wrote it off as allergies because I had been outside without my mask for a bit and my eyes were really itchy. However, by that evening I started feeling feverish and really achy and sick. I also started to get incredibly stressed about my disability hearing and all the stress triggered a big seizure. My right hand clamped down like a hand in a sock puppet face,  and my bicep flexed and my forearm rotated out so that my entire arm was flexed and cramped. It was incredibly painful and would not release for 45 minutes. My fingers clamped into a claw shape so hard that a few fingers dislocated. After a few minutes of the seizing, I began the usual convulsions, which resulted in a dislocated collarbone and ribs. I also started having issues breathing, but my supermom remained calm and coached me through breathing. My eyes supposedly kept rolling into the back on my head too.

This was the first full-blown seizure that my boyfriend, Tom, has experienced, but he was a rockstar as well. He calmly sat there holding my hand and making sure I was safe. After it was over, he said to me,  “Damn girl, you got some moves!” It made me laugh and feel so much better. I’m really lucky that I haven’t been alone for any of my 23 seizures. Partly because I haven’t been allowed to be alone since my first seizure at all, but I’m really glad I haven’t been alone. They are extremely scary and uncomfortable.

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Tom remained so calm during my seizure. He is always so calmly and quietly by my side.

I was really stressed about my hearing  on Tuesday for several reasons: A) Hearings are stressful. B) I was told I would have to sit up in my wheelchair for the whole hearing, which was scheduled to be 1.5 hrs long….I haven’t been able to sit up for more than 5-10 minutes at most for the last 5 months. C) I was coming down with a flu and had a high fever, and D) hearings are stressful….oh wait,  I said that twice, but they are.

I felt really horrible on Tuesday morning, and we weren’t sure if I was going to be able to make it through the hearing. We decided to just try and, if I had to stop, they would just have to deal with it. It started out poorly, as trying to get through security, my hand stopped working and I couldn’t sign my name. Luckily, the guard almost started crying watching me struggle and just let me and my mom go through without the additional security checks. We made it to the waiting room, and I laid on the floor. As we were waiting, we heard our law rep talking about whether my case had been postponed, and I almost lost it. It takes so much energy and stress for me to go through these ordeals that it’s not just a little,  “Oh come back a different day, ” kind of thing. Luckily, it wasn’t postponed,  and I managed to not only sit up but also talk for a good 20 minutes. At about 20 minutes, I started to pass-out and felt extremely weak, so I laid down on the floor and my  mom came over. She informed the law rep that this could be pre-seizure symptoms.

At that point, the judge went off record and said, “Did you say seizure?” and my mom said, “Yes.” The judge said her son recently started having seizures and there was no reason what-so-ever that my law rep should have made me come into the hearing and that it could have happened over the phone or through a deposition statement. She essentially kicked me out of court saying that I was too ill to be there, while sternly admonishing my rep….telling her that she should never have put me through that. So, unfortunately, that hearing took a huge toll on my body, and my fever spiked and my sinus pain become unreal. Luckily, the judge got to see how bad my condition is and maybe became sympathetic to my case. We shall see. The law rep said that we should hear the ruling in a few months.

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Hot compresses… to hopefully relieve some of the sinus pain.

That brings me to Wednesday. On Wednesday I saw my neurologist for my MRI results. Monday we had received a call from his office saying that rather than give me the results by phone as he had planned, he wanted to see me right away to go over my results. This immediately worried me because usually, if they are negative results, they tell you over the phone or send you a letter, and last time with my EEG it took 3 weeks to track him down for my results. The fact that he wanted to see me in person and so soon made me worry. Unfortunately, my flu and normal chronic illness symptoms were flaring and, by the time we got to his office, I was so nauseous I couldn’t get out of the car to go inside. The doctor agreed to talk to my mom and then come examine me in the car (which was essentially to come say, “Hi, how are you feeling?” to me). I have to say, I am not sure if I am a fan of this neurologist and don’t really trust that he takes my case very seriously. But he did patiently answer my mother’s questions.

However, the results are that I have a meningioma brain tumor. This is a usually non- cancerous tumor and is, in fact, a tumor that grows from the tissue surrounding the brain rather than growing from the brain tissue itself. The neurologist said that this is something that was an incidental finding (which makes me wonder because weren’t they doing an MRI to look for anything unusual in my brain?). He said that these tumors usually grow slowly, so it’s something that they will monitor. He said that they usually do an MRI every year to monitor its growth. Right now, mine is 8.55mm (about 1 cm) in size and is located over my right eye. He said that the good news is that if it ever becomes an issue, it is located in an operable place.IMG_0750IMG_0751

My mom asked him if this could be causing my headaches and seizures and he said,  “No.” However, the tumor is over my right eye, which is exactly where I’ve been complaining about severe, stabbing pains and visual issues. From some brief research, I read that these tumors can cause seizures, migraines, visual disturbances, and numbness and tingling in the limbs, all of which I am experiencing. Yet the neurologist insisted that it wasn’t the cause of my symptoms. When my mom asked him what was, he said he wasn’t sure but wants to wait for further testing. He does suspect POTS (postural orthostatic tachycardia syndrome) which several doctors suspect that I have. I will be having autonomic testing with a tilt table test in mid-June to rule out or confirm this diagnosis.

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My other superhero, who doesn’t like her picture taken often, so I don’t mention her as much. But she is the ultimate super mama, super human, super everything!

All that said, I don’t entirely trust this neurologist and, after telling a few other doctors, they all agree that it is important to get a second opinion. I am in the process of trying to find a good neurologist at Dartmouth or maybe Boston. Because of my wonky chronic illnesses, it is important that we find one who will look at my whole case and think outside of the box, as my case definitely isn’t clear-cut and normal.

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I am rare. It took 17 years for me to be diagnosed with Ehler’s-Danlos Syndrome and 15 to be diagnosed with Chronic Fatigue Syndrome. This is an image from an EDS campaign that I participated in. Most people with EDS take years and years to be diagnosed because it is so rare, and because many doctors don’t know much about it.

I haven’t had much time to process or do much research into the topic of meningioma tumors, but I will definitely be getting on top of that soon. I happened to have a raging fever and had difficulty breathing last night, which kept me from thinking too hard about my situation….it also caused me to go to the doctor today for strep testing (negative, yay!) and to check for pneumonia (which is currently not present….fingers crossed it stays that way). I will keep you all posted on the developments of my situation.

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I am a warrior! Pajama warrior, but still a warrior. Here is an image from a chronic illness campaign that I participate in. Although I am weak in body, I am strong in spirit.

I plan on making as many jokes on the subject as possible, because no matter what, I have a brain tumor and that’s never good… so the only logical thing to do is make some jokes, stay positive, and deal with it. I plan on giving it a name in the future because, after all, we will be roommates for awhile. It’s like a terrible, unwanted roommate who eats your food, never does the dishes, and leaves their dirty underwear on the floor. Or maybe it’s more like an asshole cat (sorry cat lovers…I’m allergic to cats, so I have a right to be stereotypical).  It has one of those feed me but don’t look at me, clean up my liter which I kicked all over the floor, pet me but how dare you touch me personalities.

Anyway, my lovely people, go smell the roses, go plant some sunflowers (Tom just planted some in our garden for me….isn’t he simply the sweetest!), kiss a puppy (any puppy will do…even if it’s not yours), and enjoy the moment because nothing is certain in life. Well, other than the fact that I am going to smile, enjoy my cup of tea, and tell everyone I love them!

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From happier and healthier times. He looks grumpy, but he really wasn’t, and he agreed to me posting this picture of us. I was so tired last summer that he carried me around in the water a lot because he knew how much I love water!
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I’m too weak to get across the street to the park, so we put a blanket just outside our door so I can get a few minutes of sun. Tom is holding me upright so I could take a photo. I get to visit Tom about once a week for a couple of hours since I had to move home for my mom to care for me. 

 

Oops. I thought I was done, but I forgot to mention how amazing the Millions Missing Rallies were on May 12. Progress is being made in asking for increase in funding and research for ME/CFS. I am ecstatic! We must keep this momentum going and continue the education and discussion about this topic. The Vermont rally went really well too.

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My shoes for the Vermont Millions Missing Rally shoe display.

Unfortunately, I was too sick to go myself, but my superhero boyfriend went for me and carried a poster of me the entire time. He helped set up and tear down things for the rally, and he helped talk to passers-by about the event. For those of you who don’t know Tom, this is a huge deal because he can be painfully shy and really would rather not be the center of attention. I am so very grateful for all that he does for me. He always does his best to make me feel better….from buying my very favorite kind of chocolate when he happens to find it for the first-time-in-forever at the grocery store,

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I asked him to get me a bar….a single bar if he found some …  and he sent me this picture.

to representing me at a rally. I don’t know how I got so lucky, and I do everything possible to not take it for granted. Two fellow chronic illness warriors who were able to make it to the rally sent me this amazing photo of themselves and Tom at the rally. It made me cry with gratitude for those who care about this illness, this battle, and little old me.

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Tom and my spoonie friends sending me some love from the Millions Missing Rally.  

 

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