And It Begins…

I have officially decided to begin therapy again. My anxiety level has finally hit the roof and I can no longer control it. I feel like if I do not go back to therapy I will seriously do something that I may or may not regret…I’m not sure yet. Regardless, by going to therapy I can at least talk it through and feel better, have another psychologist in my head besides myself and stop going back and forth in my head. That cannot be good (the internal struggle is getting pretty loud).

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I will say that the last time I was actively and consistently in therapy was high school (sophmore year). It was mandated by my parents because they could not fathom the things going on in my anxiety riddled head. I allowed a rather ‘genius’ kid to talk me into things I was not ready for because I was both in love and tired of the subject and a series of unfortunate events happened to say the VERY LEAST.

I went to therapy in college as well to be let out of my college dorm contract due to my anxiety and the constant roommate changes every semester due to roommates’ inability to pay, getting kicked out of school (addiction), and so on each semester for 5 semesters. It was sad and they kept waking me and keeping me up and since I was also diagnosed with insomnia I was let out of the contract as soon as they let me see the university’s psychologist and they were able to pull my high school records.

I also went to therapy from about 2nd grade to 8th grade due to social work to see how I was coping living with my aunt and uncle and changing environments with my real mother. It was interesting. I was never really sure what to tell them, but I hated re-telling my story with each new therapist since apparently as I got older realized they in school and doing their residency and so on. So I clammed up and eventually the ‘people’ went away because I was all better, LOL. I did not like it back then because I was pulled out of class or school every week at the same time and kids always wanted to know where I went and why. It was embarrassing. My brother and I became really good at manipulating the therapist back then…A really bad habit, to make them think everything was fine. Or evading questions.

However, now I have no desire to do this. I want them to guide me and I want to work on me. I have to know where this truly coming from. I believe I know for the most part, but I need a strong grasp on it. I need the triggers to ‘dissolve’ and I need my husband to come into the sessions and be guided on the behavior modification process as well. I cannot do this alone especially when I’m sure between this among other things it is wearing on US. Luckily our insurance covers this and so I believe this is all lining up the way it is suppose to. So here we go. That poor therapist…she will need a therapist after me…but then again 85% of psychologists need a psychologists so I am in good company…

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!

Migraines. The silencer.

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Many people who have never experienced a full blown migraine say one of two things, they surely cannot be that bad… or are they really that bad? People who have dealt with people or lived with those who have had them realize that after having so many of them the pain must be real the symptoms must be real and that after doing the research and seeing others like them in the doctor’s offices and hospitals, it is more serious than they may have ever suspected. In some cases it can mean more serious underlying issues.

In my case, I have a family history of migraines. I did not know this growing up. I had a fairly normal neurological history I felt until middle school. I started experiencing head aches that became more frequent. My mom would give me extra strength tylenol. I would easily recover. Sometimes it was simply that I was hungry or tired from all the things I was doing and that would solve the issue. However, when I got older and got to high school I began having ‘optical migraines’ where my vision would become fuzzy and it only affected my eyes. It sucked. Those became more and more frequent. I had glasses and contacts but taking them off/ out did not help. Nothing really did. I just had to ride it out.

Then they began…MIGRAINES. I cannot say I remember the first one exactly, but I can say that I remember thinking it was a headache but much worse and telling my mom that the light hurt and it hurt when I moved. She said I had a migraine. And I said what it that. After that I never really had to ask ever again…I fluctuated between headaches and migraines for about 6 months. I always knew when I had one. I do not get regular headaches anymore and I do not know why.

When I get a migraine it is always on one side of my head (right or left) and I am light, sound, and motion sensitive. It will not go away without medicinal intervention and they use to stay the same strength without waning until for many days. Now it will undulate but still will not go away until I take medication and still hang around for days. I suspect the reason it undulates is because of both my MG and because I take an aspirin every morning in addition to my migraine preventor each day; which is different that what I use to do a for the last 15 years.

My longest migraine was 60 days. but most of my migraines last 3-5 days and come 1 to 2 times a month. However, since starting my migraine preventor 3 years ago it has been 1 time a month for about 1-3 days. And the migraines are now at about 80% strength instead of 100% strength.

Yes, I want to miss work, and stay in my bed in a dark room and never move again but I can’t. When I was in undergrad I did this. I was absolutely crippled by my migraines. I could only afford to take imitrex (which I am now allergic to) once the migraine hit and nothing else worked at the time. I hated it because I had to take the nasal inhaler and it would drain down my throat and tasted horrible. But it was that or be crippled and possibly end up in the hospital again. That happened once while at school. I ended up having ‘cephalgia’ as the diagnosis but in addition I am pretty sure I also had a panic attack as they had to put me on 2.0 ml of oxygen because I could not breathe since I was in so much pain and could hardly see, was vomiting from the dizziness, and every time someone spoke it was like an anvil struck me in the back of the head. My blood pressure was 160/90 when they took it. Normally my bp is 106/60 so that freaked me out even more.

I was crying and my parents were at home in bed while I was in the hospital at school. I was scared. I just wanted to go to sleep and have the pain go away. It was not a good night. Those of you who have never experienced a migraine I urge you not to take your friends and family member’s condition lightly…this is a neurological condition that can mean so many things. Have them go to the doctor if they have not been to be sure it is not something more serious. However, even if it is not…A MIGRAINE is STILL SERIOUS! People are very fragile in this condition even if they power through like me. They are doing everything in their power to have a normal day while in excruciating pain that physically affects them and causes high blood pressure, fast heart rates, irregular breathing, and so on. That person is giving you all they have that day and it should not be taken lightly.

Mentally and emotionally they are giving everything they have as well as it takes great concentration and effort to do everything that day. they have to work twice as hard to remember things and focus. More energy is exerted on every task. So please be considerate. I’m not asking you to go easy per se but just be mindful of what it takes for them to be there and do all they do when they could have easily called out and left you in the lurch that day. That means they think more of you, their co-workers, and the company to push on despite how they feel. At least that is how I feel! Now I will take me and my migraine into my office and get on my conference call with my director now. Have a great day guys!

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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A Leap of Faith

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Staring vacantly ahead

Deep in thought

Rocking back and forth, back and forth

Wringing hands so tight they are numb

Rocking and thinking, think and rocking

Tears silently sliding down my face

I have to let go of my pride

I have to hear HIM

I have understand everything, anything

I have to let go! I have try. I…don’t know anymore

Rocking back and forth back and forth

It has to get better

I have made a decision

Is it the right decision?

Rocking and thinking, thinking and rocking

I can’t worry anymore I have to let go

I have to trust and take A LEAP

 

**These are the moments in which I struggle the most…when I sometimes want to take the reins and control everything and I forget that I have to trust and allow God to do what he has designed for me. There are times when I feel that I can be superwoman and I choose not to rest and plow forward and I reminded that I can no longer do that with MG. These were one of those times! You never know when God has equipped you with wings, a parachute or a safety net, you just have to to trust HIM!**

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.

Misdirected Frustration

I have realized that there are times that we as people do not mean to be frustrated and that we do not even realize we are frustrated or have an attitude until it is far too late. And even then we are so committed to the moment that we will state that we do not when confronted because we are genuinely hurt or possibly embarrassed and our pride has been knocked down a few notches.

Many times when I get frustrated it is because I cannot help someone that I truly desire to help. An example would be my mom. She and I are quite close. My mom calls me often. However, some of her calls are about technology. I sometimes dread these calls because I am a kinesthetic learner/ person. Let’s be clear I do not dread them because of her, ONLY because I have a hard time visualizing the problem sometimes because I most of the time I need to physically see the issue and play with it on my own by putting my hands on it and doing it myself. So when my mom calls me and she needs something right at that moment and I cannot help her it tends to frustrate us both when I cannot and both of us have our tempers flare a bit. Mine because she cannot always understand what I feel is ‘simple’ enough for her to get and hers because what I am telling her does not make sense or is not solving her problem.

Many times these sort of issues do not escalate much farther and we sweep it under the rug. But as I was driving home later that day I thought about the incident. I thought and thought and realized no matter how irritated I was about it, it was because I could not help her. It was not because she called me at work, or because she had become frustrated with me, it was because I could not help her and that I had become frustrated right back. I wanted to immediately call and apologize. Then I realized I never do apologize after these circumstances, WE never do. It’s like an unspoken thing because, well we just don’t. I guess we could but we understand that it was not serious and that it was not worth it. We always sort of call each other the next day and talk about something else and move past it. We never hold a grudge over it and nothing ever fester from it which I am always grateful because I could not live knowing I hurt my mother and she was just holding on to it silently. No, that would just not do! My mom is a strong woman who is also very sensitive and I would never want to jeopardize that relationship.

As I thought deeper into how this situation went though I realized this could permeate across other relationships. Was this also happening with my husband? Did this sometimes happen between my parents? Were they away? Are my husband and I aware? I felt like my mind was blown! My husband and I had a long sit down! We had some talking to do. It started with him remembering that I have anxiety and that frustration means slow down and try to express things calmly which can be hard when you have anxiety and to work with me, lol. It’s still hard saying that I have GAD or generalized anxiety disorder and have since I was 16 but I have always felt I have had a good grip on it until I don’t. I seem pretty normal until I’m not. Until he thinks I’m crazy…So I remind him of his ‘safe’ zone words he may well want to stay away from and the fact that I am indeed not crazy just frustrated because I have anxiety and struggling to express myself properly at the moment and I need time to chill/ decompress. He’s still learning, we can usually laugh later but at the time my anxiety is no laughing matter. I always feel so ‘little’ during my moments. I am just glad between my mother,  husband, and of course God that they make me feel seen and encouraged. I was doing well on my own but with them I am thriving!

I Don’t Advertise

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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.