ASK ME ANYTHING ABOUT MG

So I realized that there are quite a few people who follow my blog and whom I follow that have MG or some sort of autoimmune or muscular disorder. I wanted to take this chance before my surgery next month to give you all a chance to ask me anything about my symptoms, feelings, thoughts, or experiences with Myasthenia Gravis. It can be about the past, present or the future and I will answer it. I will keep your name anonymous if you wish it and you can send me an email or simply reply to blog with a question. I feel that sometimes this is the best way to help one another out in the community as well as just relate to one another.

 ellen degeneres ask questions ama ask me anything GIF

Tired is as Tired Does!

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I have a friend who keeps reminding me that the reason I am tired is because I have not slowed down to rest and I keep going non-stop. I think to myself…DERH! I know this, I am sure it’s written all over my face in bold permanent marker that refuses to go away. The sad part is that I do not have much of a choice. For some reason, when I am not as busy in one aspect of my life other aspects decide they want to pick of the ‘slack’ and require that I become busy.

Example, I get a day of rest coming up on the calendar that I have been looking forward to for weeks because I have taken it off or because it is a holiday and somehow everyone I know wants to schedule something with me that day. I feel bad because I am not as social as I once was because of school in the past, now work, and MG. Most days I can push through the MG, rest is still very important. So when I can get it I try so that I do not land myself in the hospital or rack up unnecessary treatments when I can save my veins and PAIN from the treatments. They are not that pleasant. Moreover, they also require TIME. Something I already have little of. So if I get run down then I have to add in treatments and then figure out when I have time for them which actually makes me busier.

I also try to take on things I enjoy too and yes eustress (good stress) is still stress. Your body still becomes tired after it. Even after the great adrenaline rush that occurs and all the positive benefits, you still ‘crash’ afterwards become tired afterwards. Your body has to recover.

Sometimes the best way for me to prepare for such days are to take more than one day off; one to hang out with 1 or more people and then next to actually rest. It sounds crazy but I have got to rest sometimes. I work more than 50 hours every week. Sometimes I just have to do the low key things like eating out (eating the healthier options when I can) or doing an art class (I love all types of art so it doesn’t really matter).

When I get too tired…I just hide. I stop calling people and go to work and home and forget people exist. It’s not intentional anymore. It’s a coping mechanism I developed in undergrad when I wanted to be left alone by those I dated and it spread to all relationships over time. It developed into a habit now and I seem like a hermit when I am really stressed. No one hears from me and I do not always realize I am doing this until one of my best friends/or parents texts or calls me and says they have not heard from me in a while. It’s sad but true. I don’t mean to push anyone away but I just get focused on getting things done and then getting home as quickly as possible to relax because that is all I have the energy for until I can create more time. So I sustain this behavior until someone snaps me out of it and I try to rearrange things/ re-access if I am actually still busy or actually on autopilot!

It’s crazy how focused and habitual we can become!

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I Love You a LATTE Kind of Day

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I am a naturally energized woman. It just comes out of nowhere. When I think I have nothing left my second wind comes. Then when that disappears, welp I somehow get a third and fourth. I know it’s a strange thing to say since by having a chronic disorder and an autoimmune disorder I should be whining about how tired I am and never having enough energy but I do somehow always manage to get by. I know this is nothing but my faith in God that gets me there though because there are days like yesterday that I should NOT have been able to finish the day without every symptom I have flaring up and raising every alarm and me just passing out.

I had a 20+ hour day and was so active in the day that my “pacer” app hit new records for me and I was not even shocked. I was actually elated. My boss at my part-time job even freaked out because I was not at my second job at my usual time though and he thought I was not coming in (though I do not have to be there right at 6p as long as I am before 2am) to get my few hours in. He apologized for the freak out since I am always god at calling AND texting to make sure someone gets my message by noon on any day I am not going to be in. I did not need the apology because I understand that in his position it probably has happened many times from other employees. He was just doing his job and checking just in the off chance something happened and he needed to send someone to fill my position last night. When you have worked with a ton of part-timers you understand the mentality and you do not mind it, in fact you admire and appreciate his efficiency and dedication especially at 8:13p.

Yesterday, I woke up at 4a worked my full-time job until 1:30p. Then went grocery shopping and put those away at home. Then got to the dentist office 10 minutes late, LOL. But I knew that it was easier when it was less busy at that time than fighting the after work crowd. I got an excellent report by the way at the dentist better than I had in a while since they always say my gums are inflamed and this time they were excellent.

Then I left there and went to the hospital to sit with my grandmother who had just had hip replacement surgery that morning. She got out of surgery around 3. By the time I get there at 4:30p physical therapy is there rubbing her legs and minutes later she is up and walking for the first time since her surgery which she literally just got back from. I was amazed and proud. She was doing great, such a trooper. I sat with her and kept her company and talked with her nurses and made sure I got any information needed for my mom and aunt who would be with her more often than I for the next couple of weeks during her recovery.

I left at 7:50 and grabbed dinner and put gas in my car. Then went to my part-time job. called my boss who called mere minutes before that with the freaked out to ensure I was looking at the work phone to check in and did just that. I cleaned my building and left work. I went home and walked through the door at 10:55p and then sagged with the weight of the day finally. It had hit me all at once. I was glad that my ankles had not swollen to grapefruit size again. It told me that it was in fact going off my migraine meds for those 3 days that did me in last week. They were a tad swollen but who can blame them for 20+ hours of movement this time. But they didn’t really hurt but the rest of me did. I put my clothes in the wash, got my things together for the next day, and ate what my husband cooked. Then he said GO TO BED in a text, LOL. He was in another room because I was going to sleep with my foot propped up and he didn’t want to snore me out of existence or bother me in any way so he slept in our guest room. I don’t think it took me 20 minutes to fall asleep for once. I was sleep around midnight thankfully.

I woke up this morning and laid there for an hour before being able to move, LOL. It was hard work moving. I knew I overdid it yesterday but what was I to do? I needed to do those things, they are not everyday occurrences, at least not in that sequence. So I borrowed some energy from today and cheated a bit. Needless to say I’m paying a bit for it today. I bought a coffee today. I can count how many times I drink coffee each year. It usually follows a day like yesterday…So there you have it. It’s a latte sort of day with mindless clicking at the keyboard to stay awake, countless to do list pre-made so that I can’t forget what I was doing and stay on task and a I made everything for today on my calendar yesterday or Wednesday because I knew I would be in this mental state. My memory gets bad on days like today thanks to my migraine preventor so I just prepare for it. My to do lists, emails, and client workouts are all set and I get things done when I am alert and able. That way when today comes I seem on my game though I am totally NOT.

Days like today between the mindless clicking on the keyboard I have large lulls of daydreaming, I have switch between project often, and sometimes I have to walk around or read a book or something to keep it together (usually only lasts for about 5-10 minutes at a time) but I know it’s my anxiety getting to me because I need sleep. Today will be a bit worse since my co-worker took off and I have no one to talk to…Fridays in my facility people leave early so it is always a ghost town in here and then without someone in here and I’m feeling like this I am trying to rein in my stir crazy feeling. The anxiety of no sleep feeling bottled up and then wishing I could sleep but being buzzed on coffee is a weird sensation!

A Breakdown for A buildup & I Want EGGS

Everyone always says how strong I am. Both physically and in spirit. I always think to myself maybe physically but I am not that strong spiritually surely not! They say we mean to say you are resilient. I say I guess. I believe them in hindsight, but as I am going through things it is always a bit harder to see. I always have to give myself a bit of a self-talk and say yes I have been through this or that and I can get through this now. However, when it comes to Myasthenia Gravis…to me there are days I think of it like a cancer. I just want to be like my friend and say F Cancer. He use to say it all the time when his brother was living. His brother was strong and a fighter and even when he was on the Up swing he would say it. His brother was famous and was all over the t.v. and I never got to meet him but my father worked with him and I met his brother while working at my current job before he left.

Well last night I said it…I said F Myasthenia Gravis. I was tired of feeling like a slave to it. I usually am so mild about it. Not just in front of ‘audience’ but behind the scenes too. I have to stay strong for my family and never let them know how much it hurts to feel inferior. To feel WEAK. Someone who felt like a athlete who has to feel side-lined. I am not sure get that back and I want it so bad. I have to get back my swimming. I have to get my life back. I have to get ME back.

I said F Myasthenia Gravis because I am tired of having moments when I am not sure why this or that is happening. I cannot always track why something has happened to me because I am an anomaly among fellow myasthenic people. It’s always a mystery to the doctors what is happening to me. I never blame them just work around it.

I saw F myasthenia because it makes me cry. It makes me break down when I want to be happy. It makes me scared where I had no fear. It makes me wonder if I am going to die from something as simple as the inability to clear my throat. Something most people take for granted. You all probably do it without thought often. But when I am symptomatic I do not even have the strength to do that. So then the mucus forms and gets stuck and I am choking. If I cannot calm myself and relax and gain enough strength or get to my suction machine in time, I am in deep trouble. Yes anxiety which I suffer from makes MG worse! YAY me! And believe me calling an ambulance does not help because they will NOT suction you unless they see an object so they just keep talking to you and asking you questions (it has happened). Being certified in CPR/FA I get it but they do not understand MG and they honestly have no idea what it is. They had to keep asking what it was and how to spell it. I had to keep pointing to my bracelet.

I say F Myasthenia Gravis because no matter how much you want to forget you have it because you are stable and things are going well, it always reminds you that you have it. You have a flare up, you have to fill out a questionnaire at the doctor’s office, you do an activity that just manages to overdo a muscle, or someone who hasn’t seen you or know your situation reminds you by asking something like when you guys going to have kids!

So yea last night was another night that I broke down and just cried about things. I was sitting in the car on the way home from my part-time job and had the mucus issue and not enough strength to cough. I panicked. Then I calmed myself and said I can make it home to use my machine and I knew I could relax enough to clear my throat. Many people would say why not take your portable machine with you. I totally forgot. I am not used to carrying it everywhere because when I as sick as I was 2 days ago I could not. I was too weak to carry it anywhere. If it was in the car as everyone suggests I keep it (with my husband at work) I would have died trying to get to it just to use it. I could barely walk let alone lift it (though it does not weigh much). Some people also ask why I do not have 2 of them…I was ‘given’ this one by the hospice of the hospital and that was over a year ago and I have no idea who contact as my insurance paid for it and I have not seen a bill since, even though it is supposed to be paid for monthly…It does not seem to show up on my insurance and I can see everything that comes up on my insurance (charges). So i’m stuck as to who to contact to get another.

If I could just buy another straight out I would, but like oxygen, I think it requires a prescription or something since they ‘train’ you on how to use the unit and what have you. I also need additional supplies soon and so I have to contact someone so… we will see how this all goes.

Anyways, after breaking down I found myself apologizing to my husband who had to witness me come through the door crying. I apologized for crying and being upset as I came through the door saying how I hated having MG. I was just fed up of being afraid. I do not like not having control. I explained that I was just tired of feeling that was and feeling like I was always running out of energy at the worst times. An he told me not to worry and just rest. I said well I would like to and he took my coat off and can you make me some eggs, LOL.

Secretly Answered…

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So that poem earlier was totally what I had gone through and was feeling. I had to let go and take a leap of faith and let my pride go about how long I can go without treatment. I always want to be superwoman and make it 12 weeks and longer now that I know I can. However, there are sometimes extenuating circumstances and reasons beyond my control that I cannot foresee that say that I cannot and that I need to REST and allow myself to be rejuvenated and not worry about what could be. The problem I have is that I sometimes begin to worry about all the possible problems that can happen when I have to let go. Who will pick up the pieces if I have to let go.

I was worried I would be dropped by a particular specialist who has a waiting list a mile long to been seen regarding attempting to have a baby. For me this requires being taken of several medications and maybe being placed on others to compensate for them. It will also require being seen by other specialists along the way. I was so worried and I began to cry. I then decided no matter what I needed this treatment and just made the decision and placed it in God’s hands. I made no mention to anyone.

I called my neurologist as usual to set up my plasmapheresis treatment for tomorrow. He was able to get me in. I was happy. He called me back to confirm it then he said something I was not expecting but let me know that my prayers had been heard. He said by the way we have been meeting and have come up with some alternatives that may work for you regarding your medications and we need you to make an appointment with us after you have had your treatments so we can discuss this and get you moving.

I was in shock. I was so relieved to hear this information. It was satisfying to my soul. I thanked GOD. I never said anything to this man about this and for him to say that to me made my entire day! My only reason for seeing the specialist in the first place was not just for a baby which is very important but because I needed an alternative for the immunosuppressants and steroids that suppress my immune system which cause me to be more susceptible to illnesses. I am stable with my MG and tired of the EXTRA stresses of colds respiratory infections and viruses. It is just not fun when a normal cold is like having the flu and the flu is like absolute death for me. I am durn proud to have gone so long without a hospital admittance and (knock on wood) keep it that way. I have gone a year without an MG related admittance and 9 months without any overnight admittance period.

I am still learning but I know I can do the things that I am set to do through God and I believe this wholeheartedly. If I pray for them and get them I must be ready to accept them and all the blessings/ consequences. I am learning things can be hard and hard work at that but if I want it to be great it takes that sometimes! I have to learn to listen too and not to the human self but the spiritual self and to God. That is hard if you do not have a relationship with him and I am working hard to keep that line open and clear!

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Mastering Sleeping With Eyes OPEN

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So today I was pretty doped up on cold meds, benadryl (for the hives, and all my MG meds to boot. On top of that I was chugging hot tea, soups, and other healthy but sick ready foods. I say healthy because I was making them from scratch not buying them from the store where they are full of SODIUM, though when you are sick I’m not sure you care as long as they are warm, you get comfort, and fluids. So yep I felt like I could literally fall asleep at any moment. My belly was full, I was warm  from my food/ drink choices, and my meds had me sleepy and comfortable.

I realized that about a tird of the way through my shift after waking at 4am this morning that maybe FOR ONCE, I should have listened to my husband and stayed home and rested. I was so sleepy it pathetic. I felt like the insomniac in high school anatomy and Physiology again. I loved class with a passion, however it was like the last class of my day and for a kid with a gazillion after school activities who got up at 5a everyday and fell got home late everyday and then could not sleep until after midnight every night this class would get to me during the lecture days. My instructor would pick on me because he knew I always had the answers but that I had a habit of not daydreaming but actually sleeping with my eye wide open. He said there was no way a person did not blink for that long while staring at something, LOL. He actually timed me on several occasions and would make random jokes to the class. Because my eyes were not partially open but completely open (stretched even) as if having a seizure and I would be completely gone unless he said my name. He nicknamed me the horse because of that because I slept with my eyes open and was quite easy to alarm/ startle back to my surroundings, lol. It was a running joke.

Well today reminded me of this as I was quite utterly relaxed for some time and stared blankly out a window for more than 10 minutes (or more because I could see the several people who checked in since I had sat down and first looked out the window) and blocked out all sound and thought and then when I “came back to” and blinked I was like whoa…it’s been a long time since I’ve done that goodness I actually felt like I was comfortable but I really felt like I was sleep, LOL.

Now, if I could do have done that for the rest of my shift I would have been in the money, lol!

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357/365 – Trial for myasthenia vaccine launches

This is amazing! I am glad this blog was seen and hope that this continues to gain speed!

365 days of myasthenia

At the end of December I received a press release from Curavac. The company representative said he had come across my blog on the vaccine and wanted to provide an update on its progress.

The Myasterix consortium launched the first phase of the clinical trial at the end of December. The firm said it ‘study will evaluate the safety, immunogenicity, and also explore the efficacy of a therapeutic vaccine candidate (coded CV-MG01) with designated orphan drug status in the USA and Europe by the FDA and the EMA. CV-MG01 comprises two synthetic complementary peptides conjugated to a carrier protein’.

It will be randomised, double-blind, placebo-controlled and includes a dose escalation. The study will be carried out on 32 MG patients and comprises 2 parts. These are: an active part that lasts 5 months and an observational part that lasts 2 years to assess long-term treatment effects.

Dr. Stephane Huberty, Managing…

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I’m Stuck in a Vice Grip

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So on Christmas day a cold materialized, if you know anything about a cold you know that you actually caught the cold 3-4 days before you actually showed symptoms. So i knew I likely caught it from my snuggle bunny (one of nephews) who was all over and spreading the love while I was babysitting the weekend before, lol. The cold was not so bad for me I seemed to get over it pretty quickly. However, the cough always seems to linger forever. It’s something that has been an issue for me since I was a junior in high school when they tried to say I had asthma but I refused such a diagnosis and they eventually settled on chronic bronchitis. It can take 1-3 months before my cough goes away without using my inhaler to treat it after a cold.

Moreover, with MG if there is mucus involved which sometimes there is it can be 10 times worse. It can cause breathing issues and if I am weak choking and aspiration and pneumonia. The worse part is that since I have gained a fear of choking known as anginophobia it makes the situation worse. I have higher anxiety throughout and can even have panic attacks during this time. I have to actively try to remain calm which is very difficult. So what I do is alert my husband, tell him I feel bad and take a specific cold medicine I trust and do a very routine regimen that not only comforts me but appears to work.

As I have become stronger in the last year with my MG I have not needed to be hospitalized for regular colds and such so unless this is something more I will stick to the routine and hope this passes quickly as well. I always give things a certain time frame to pass as well; so if it surpasses that then off to the outpatient we go for treatment before we have to be admitted. I do not want a ‘forced’ vacation. LOL. I have enough on my mind. I like to stay in control and in the hospital they tend to take a bit of that out of my control. I will give everything another week but then after that off to treatment we go. I have no desire to continue to feel like crap. This is not normal for me especially since I had treatment just 3 weeks ago. The only difference from normal is that I have been sick basically since that last treatment so I am hoping that I will feel better after next week. If not I will bite the bullet.

I Don’t Advertise

Chris Workout

So I guess it’s weird to people that I do not advertise that I am a Health Fitness Specialist! I have a degree in Exercise and Sports Science and I am ACSM certified as well as being an EXOS Performance Specialist. I have been a personal trainer for over 5 years and fitness instructor for 7 years.

When people talk casually around me I offer my insights and then tell them my credentials. I do not advertise it for many reasons. The main one because I struggle with body image. As a person with all these credentials people expect you to look a certain way regardless of how capable you are of doing your job. If I look overweight to them they judge you as incapable of doing your job properly. Moreover, if you do happen to become overweight at some point for any reason they definitely judge you. I looked overweight for years when I was not but did not care because I was able to do the work and silence them.

However, for a period after being diagnosed with a chronic illness (Myasthenia Gravis) I could not teach fitness classes and I gained weight because it causes neuromuscular weakness and fatigue I could not balance it at first for a long time. I was unstable. Now that I am stable and getting back on I have a poor body image.

But I have learned that this is a part of my life and that I cannot dwell on it. My doctors will figure out why I have suddenly had a recent unexplained gain in weight a few months ago when I was in a downward trend and we will get back on top of this thing so that I can move forward.

I also do not advertise because I sometimes people ask me to help them outside of my job and as much as I use to look for such business I no longer desire such a change because it’s almost not worth the headache. People are not consistent and tend to break appointments and not pay on time and so on that’s just too much to deal with on top of my busy schedule. Then you get family and friends who constantly want freebies and then they can be unreliable and hard to schedule too and they do not stick to plans either. It’s just a giant headache, lol. They do not know how to take you seriously because they see you as friend/ family not trainer disciplinarian. They do not take you seriously and until they are serious I refuse to take them on.

All in all I just don’t advertise, LOL.

The Cheese Slipped off my Hot Dog

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As I literally was watching the cheese slide of my hot dog yesterday I realized this was was actually happening in my real life as well. I mean as many good things that are happening for me right now I am still beaming with joy (don’t get me wrong, but there are a ton of tests crashing over me like waves and causing me to sputter a bit at times. I have to wonder if I am not over booking myself. The sad part is when I am booking myself and putting it in my planner there is literally NOTHING else there or around the date then other things pop up all around it there are either important or last minute or stressful mentally or physically that cause it to become a jam packed week or day. I can go from having nothing planned on a weekend to suddenly a full weekend. That happens more often than not. However, this does not usually bother me too much.

Then there are times when I think I have a handle on everything and I get knocked for a loop. When you find out something you budgeted for (time or money) is now pushed up 6 months at a time you have not budgeted for. Then everyone involved smiles at you as if it this is quite alright and you grit your teeth and try not to scream. Especially at persons who could not even coherently explain the problem correctly to tell you why you now have to make such changes. Yesterday I already knew my health insurance was on a non calendar year July 1-June 30. It was just when it was started with he company. However, I only found out yesterday when filling medications that the deductible is on a calendar year and restarted in January. Yet the special insurance lady kept saying the whole plan started over in Jan, which was wrong and I had to call my employer to find out what happened since one med alone with a co-payment cost over $300.

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I went from one hive that was disappearing over the weekend to 3 new hives since between that incident and now. It has not even been 24 hours. I am on stress overload! Usually my stress is not that quick to happen but since just before Thanksgiving since I have not fully been able to get rid of my hives, they have been immediate. I can’t shake em! Everyone is like call the doctor and get some meds but when you are as much as me, I wonder how effective it would be on one hand and on the other I’m like GOSH not another durn pill I already take 17 a day and two prenatal gummies on a regular day. I also have a ton of ‘as needed’ scrips for migraines and pain, so really who wants to go there!?! I figure I will only go there if they can promise it will go away and not come back for months or in a day or something otherwise if my suffering is going to be as long as taking benadryl and putting on cremes and waiting it out for days like I already do then I can treat it myself. I hate living with such high anxiety and when you have suffered with anxiety for as long as I have have you just DEAL. It’s so sad. UGH! It’s an endless cycle I put myself through! I just wish one day I woke up and all my anxiety was gone for good!