SO have you guys heard of weight gained in just your face? HA well it sort can happen. I am a very healthy person despite my chronic illness and have managed to maintain and even lose weight while on the dreaded PREDNISONE. But there is an effect they call the Moon Face that happens to the face while on it. I call it the marsh mellow effect, lol. It’s where you face actually begins to round out and gets a bit chubby due to fat redistribution. I hate it because before my illness began as I was losing weight I was starting to show my weight loss in my face and it felt fantastic.
Now when people see me, as most people do they look at my face and think I have gained weight instead of looking at my body where it was obvious that I lost 20-30lbs. People were actually BOLD enough to ask if I gained weight because they were too blinded by the facial appearance of weight gain that they could not see the success elsewhere which nearly killed my motivation.
I nearly lost it and sank into a depression. I have to assume it is in our nature to look at the face first and make our assumptions there first without looking elsewhere or to feel in discord when we see weight loss in such a huge way in one area but not in another like that and not know how to react.
There are also many other issues that happen with prednisone like undesired hair growth, acne, thin skin, bone thinning, mood swings, insomnia, serious abdominal striae, etc… Though I have learned to move past it now for the most part I will say it I learned to educate others on it and taught people some sensitivity along the way, lol. Please find the link below to find more information on prednisone and its effects:
So there is always the option of getting a port catheter for your treatments if you get plasmapharesis. There are pros and cons. I can tell you that you have to decide what will work for you. It all depends on your lifestyle and how your body responds to treatments.
Can be semi-permanent (can stay in for several months). However, the require maintenance by professionals or yourself. They cannot get wet and they need to be re-dressed and flushed weekly. So no swimming or showers… You will need to wrap in saran wrap and/or use a spray handle shower rod. I had to do this for months. The ports work a bit easier in treatments though when they are working properly though because they are a larger access point so the treatments go faster. It’s also a plus when you are tired and need to sleep or rest when tired. But a down side is if you are active and start to sweat you have to change the dressing more often and clean the wound site more often to prevent infection.
The port is also an eye sore and annoying because it can be seen ‘around’ some of your clothing. If you like to wear tank tops, boat neck tops, or anything off the shoulder forget it because you can see the bandages. You also have issues with the tubes slipping out of the bra area. I tried to wrap them in gauze and tuck them so they didn’t swing and annoy me when I had one. I also hated the port because when I exercised and did front lying things it was uncomfortable to the point of pain some days and I teach fitness classes so I was just too active for that thing. LOL.
Needle sticks are tough to deal with but if you can muster them it may do wonders for you. There are several down sides with this method as well too; however, this is the method that I prefer. You cannot move your arms in this method because you have 1 inch steel needles in your BOTH antecubital (front of the elbows) simultaneously like you are giving blood. Then you are have to squeeze a little stress ball the whole time which sucks if you are fatigued too much with your MG symptoms (no sleeping or resting there because the machine will cut off). The needle sticks can run almost as fast as when you have a port but it depends on the quality of your veins and your hydration levels. If you veins are bad the you should stick to port because otherwise a 90-120 minute port treatment could turn into a 3-6 hour needle stick. You and the nurses will dread your appointment. In addition, after your sessions you may have some bruising sometimes at the stick site. Just like when giving blood you get wrapped up and then in a few hour take the bandages off depending on if you are blood thinners and the gauges of your needles (i use 16 so I leave mine on for 3 hours) then put on band aids. That night I free myself of all wrap and band aids and I’m free to go and you can go on about regular hygienic care at any point in the day.
With both you will have scarring as with anything that cuts into the skin. So choose wisely if you have a choice. When you are in the hospital you may not always have much choice as they will give you what is best so they can get the best access and the least amount of resistance and give you the best rest. You may not want it but it will be what it best saying this leads into…
CENTRAL LINE PORTS
I have had several of these and they are like tunnel ports that I spoke of early but they are VERY temporary and go in the jugular and stick out of the same area. The different between that and the first one I spoke of is that the other is tunneled, goes in the jugular and sticks out of the chest about 2 inches under the clavicle. Everything I mentioned earlier is true of this model as well, except when you are discharged from the hospital they take this one out.
I have gained a healthy or rather UNHEALTHY phobia of neck surgeries, strangulation, and lying on my back AWAKE for surgery thanks to this particular procedure! I have several scars up the right side of my neck and anxiety galore from the mere mention of needing a port, central line, or neck related surgery. be warned though it is quick if you are in crisis or at a learning hospital it will do a number on you (I will just leave you with that thought). Since then I go to my preferred hospital and they give me anxiety meds and I at 30 years old take my stuffed animal that looks like my dog and endure. Laugh if you must because I do often but I do not care, it gets me through that trying moment when I wish I could black out at will, LOL.
I’ve been called dizzy many times in my life, but I had rarely felt the disorientating sensation before myasthenia. Since I started taking medication, particularly the immunosuppressants, I’ve found that the room has been spinning every now and again.
Usually it’s when I stand up too quickly or when it’s really hot. When I first started noticing it, I thought I wasn’t drinking enough water or getting enough sleep. While both of those can still be true from time to time, it has happened too often to be about these things alone. Typing dizziness and myasthenia into google, a couple of pages about vertigo came up linked with mestinon so it’s worth bringing up with my consultant next month.
At this time, it feels like a relatively harmless side effect of my medication but I want to make sure there’s nothing underlying it.When it happens, I have to steady myself…
I have fairly certain I have a condition known as anginophobia. It where one has fear of choking or being smothered. They say that phobias even this one are irrational (unfounded even) but I do not see it that way as mine started due to a botched surgical experience that traumatized me. Then after having to get several of the same procedure without therapy after that experience, each time being in crisis mode for MG (meaning I was usually having a breathing issue making it hard to breathe) it simulated the anxiety of the first experience of choking on my mucus. I start to panic each time. Then each time you get a central line catheter place they have to apply force near your neck to insert it and again the anxiety gets the best of me knowing that this is coming. They have to crank up the medication.
Before MG I had only had my wisdom teeth taken out. 9 years ago. Since MG I have had several small outpatient surgeries. The only ones I get anxious about are the ones that go near my neck. Don’t get me wrong I get nervous about any surgery right before hand, but when you even say you need to go near my throat or neck now I honestly start showing signs of anxiety starting with the heart rate, sweating, and tension through my whole body.
One example was an IVC filter I had placed after pulmonary embolism that I suffered due to my birth control while in MG crisis. It was placed using my femoral artery near my inguinal crease area (the fold near your hip flexor and abs). When they said they had to removed it I figured they would retrieve it the same way…WRONG! I got a huge surprise while in the hospital that day for that outpatient procedure. They said they had to go in through my neck to get it and I instantly freaked. I called the doctor in and told him my concerns and he checked for scar tissue since he did not know about my previous central lines in case he had to use the ‘long way around’ route which freaked me out even more. I promise you, my husband who NEVER (at this point in my medical appointments) sat up and looked away from his phone because he heard him say put it out through my neck. He knew my fears. At the end of the surgery b/c once again I was awake during the whole thing I made them laugh when they showed me the filter and I asked if I could keep it and they said no, lol. They said it was the first time I smiled the whole time.
They always want you to talk and try to keep you mid off it which does help but I just cannot I am so afraid after my first experience. I was at a learning/ teaching hospital in crisis mode where it took them forever to start a central line procedure. I had my trusty suction tube because I was producing quite a bit of mucus. This caused me to cough often when lying down. I asked if I could sit-up until they were ready to start and they said no. It was frustrating. So then I kept coughing and then nurse took my suction and was barely paying attention and I couldn’t cough forcefully enough because I was in crisis mode. Then she kept jamming it in the wrong areas. Then every time I tried to sit-up because they were not ready yet, she would hold me down making me more anxious. Then they strapped me down because the table is so little. I seriously almost lost it then. I just was not doing well. When they finally started it and got it over with we got back to my room and I was complaining that I could not breathe and someone to help and no one was coming and I began to vomit on the floor over the rail of my bed. My neck hurt I was trying to suction myself and being in a learning/ teaching hospital a ton of newbies just sat and stared at me as I gasped for air. Eventually someone came into the ICU and gave me some medication and cleaned me up and they put me on a this strange c-pap type machine that forced oxygen in. I had to breathe in rhythm with it or I felt like I could not breathe again. I could not get out of that hospital fast enough.
Though I know logically I should seek help and therapy due to my educational background, I have been procrastinating in hopes that I can somehow get myself through this without that. I figure I may find a way that will not require a professional’s help but I may not have that luxury much longer if a cure does not come quick and I have to continue with MG and hospitalizations since they like to do central line ports so often. I do not get hospitalized nearly as much anymore but when I do I know they are going to use that method which sucks and that means I need to be able to tolerate it better. I am working on this…WE will say that based on my favorite model the stages of change, I am in the contemplation stage as I have began to research and try some methods be continue to relapse. I will not call anything action though until I am honestly seeing either a professional or a sound method that should work that I COULD stick to for 6 months or more if I tried. Pray for me guys! I do want to change but I am honestly scared…I do not know if anyone can help me since this was due to a trauma and not a made up fear of the unknown like some phobias (as this comes from someone who had no known phobias before this).
When I was first diagnosed with MG I had no idea what it was but since I was not that symptomatic and medication fixed it almost immediately I was not that worried. Once I googled it, started having more symptoms, and began having hospital stay after stay the reality set it! I have a lifelong chronic disorder. I had felt a little hopeless for a bit. I felt like all my healthy lifestyle and good behavior meant nothing. That everything bad that I ever did suddenly outweighed everything good I ever did.
The bad things in particular that I felt I had gotten over and forgiven myself for suddenly resurfaced. I felt I was being punished. I felt I was being punished for the sins that of the abuse that had happened to me as a child though it was not my fault I felt that somehow I was suppose to endure these things and I did not deserve to have a better life. I was in a dark place. I was hurting so bad. I suddenly had thoughts I never had. Thinking that people I knew personally who were unhealthy and did some pretty bad things had it better than me in several ways. I just did not understand it.
These darkest times were usually when I was in the hospital by myself for days on end and when I was hooked to many machines unsure of what was to happen to me. I kept my laptop with me and I would talk to my mom via skype and pray. I would also call my biological mom. The two of them would keep me balanced. My biological mother an addict now clean for nearly a decade gives me more realistic and street savvy advice with a spiritual heir to it. While my mom (my great aunt that has raise me since I was 4) gives me religious, spiritual and nurturing advice that that speaks to me on a different level. Both are loving and caring but each gives me a yin and yang that says a different thing in a matching way that makes me whole, if that makes since. I sit and meditate on their words, my thoughts, the bible, and watch church on my laptop and it seems like it is speaking right to me. God knows the message I need sometimes. It’s okay to sit and cry but you cannot stay in the self-pity and wallow in it for long because you can become lost. I am a very cheery person so if feels unnatural to stay depressed and everyone around me notices it as well. I do not like who I am there and therefore I immediately seek to change it because I enjoy putting a smile on other people’s faces, I want to be a light in other people’s lives to give the hope and to know that there is something to look forward to. I look forward to better times, more life to live, and love to give. I also hope that in my lifetime there will be a cure but if not I will continue to have fun and enjoy life.
So there are times when you find that you are busy or you are enjoying yourself and you notice you start to feel very tired, fatigued, or all your symptoms start hitting you at once out of the blue after being controlled for a very long time. If you are stable and you cannot seem to figure this out it is highly likely that you missed a dose of your maintenance medication which for many of is mestinon (pyridostigmine).
I carry a pill caddy or pill organizer that is divided into days of the week and morning and night. Though there are ones that are more advanced that have more divisions in them. This suffices for me for now. However, there are days that I makes mistakes when I am tired. At the beginning of each week (Sundays) I sort all my pills into the caddy/ organizer for the week. However, when I get busy or I am out and about I tend to forget at times to check the time and forget to take my mestinon. Sometimes I even get as far as the next dose (a full 8 hours away, since I take it every 4 hours) before I realize I missed it. That’s when things start making since on why I was slurring or feeling weak or having trouble swallowing during a meal. If I have just had my plasmapheresis I may not notice at all if it happened within a week’s time of the treatment though I tend to be asymptomatic during this time since the treatments are so beneficial to me.
One big thing I noticed is that I try to take my mestinon as soon as I remember; however, the bottles says if it close to your next dose just take that dose. Well I will tell you this, in the hospital they gave me doses within 1 hour of each other. This made my symptoms go away very quickly and I there were no side effects or ‘overdose’ issues. I am not telling you to do this as I was in the hospital under doctor’s care. I am telling you to be careful, watch your dosage, try to take it the same time each day, and count your medication. Double check it often to ensure you took it to prevent issues. However, if you know that you, and/or your doctors have cleared you to do what my doctors have allowed me to do in extreme situations like that night for me in the hospital, then by all means do so. I would talk to you doctor first. If you find that you are forgetting to take your medication often I would also talk to your doctor, there may be another option.
Sometimes on my busiest days, or days that my schedule changes due a medical procedure, new medication, or job schedule changes, I set alarms on my cell phone/ calendar to remind me to take my pills throughout the day. Do what you must to ensure the healthiest you. We hope a cure is in the works soon to stop this madness but until then preserve your body to see that day!
There are many days that I feel worn down and the only thing I want to do is sleep or hide. But I will say that smiling and pretending to be normal gets me through the day. Though some people may say this is called being fake I disagree because at the end of the day I feel better because I have made it through the day, it generally was a good day, and that smile comforted others in some way.
My philosophy is that you should not look like what you have been through. That is the life of a MGer. We basically look normal and for a person on the outside looking in, we look as if we have no disorder at all, unless we go around depressed, complaining, or acknowledging the physical scars we may have incurred from any surgeries we may have had. I encourage and challenge you to keep the mindset of smiling no matter what. I do it in when I am in the hospital, at home, and work and it is amazing the positive looks and comments I get. I do not do it for that reason, it is something I have always done but when I was at my lowest point in life I had to relearn it some years back.
If you are new to this method start by trying to find the positive in every situation…I know that sounds CRAZY and hard to do. In everything bad that happens or that really bothers you or gets you down find the positive. If you do not get that job, think that there must be a better one coming that better fits your needs (though at that time it may not seem like it). Sometimes this may not be possible at that time because we are human and we are emotional. But when we calm down we realize that positive things did happen we we just do not say anything and think on it. Many times I just say nothing and realize that things come together at some point. It may not always be immediate but they do come together. I didn’t get that job, but then I hear the company was in the news for something horrible, or I was late to work and there was a car accident right where I was supposed to be had I been on time, or I was sick for a week and used my vacation in the hospital but at least I had it to use and my boss is understanding and flexible.
Sometimes my smile comes from thinking of what I have left to look forward to, my family, husband, the future, my vacations, my games, my reading, my blogging, life, and so on. I Thank God for all of that. That makes me smile often too.
SO smile life is not that bad when you can still smile! You can inspire others and comfort many more!
So there is not a lot of information on pregnancy and Myasthenia and many doctors almost try to talk you out of it. I have had had one doctor that was so rude she even went as far as to say, “why would you want to have kids?” Needless to say I reported her. It is a very sore spot for me as I was diagnosed wit Mg 2 weeks before my wedding and have always wanted children. So when I was told that it may not be possible and then that I may have to wait 2 years or that it could kill me and so on, I was very confused and upset. I am constantly asked when I say that my symptoms are exacerbated around my menstrual cycle they ask if I want MORE kids (insinuating a procedure to end them and help reduce my issues). I’m always like MORE kids…I don’t even have one yet lets be a bit more sensitive please and at least ask if I have any first. Doctors are so desensitized nowadays.
After doing a lot of research and speaking with many doctors I found that people with MG can and do have babies. There are several concerns to deal with though.
What medication you are on: cell cept for instance causes severe birth defects and you even have to sign a waiver stating you will use several types of birth control while on it and not try to get pregnant while on it. Other medications come with similar warnings.
Plasmapheresis: You have to be able to go 1 trimester without this treatment as it can act like an ‘abortion’ in the first trimester . You want to go as long as possible without this treatment but if you need it in the 2nd and 3rd trimester it is possible.
If you are just diagnosed with MG you want to wait to try to conceive for at least 2 years b/c of respiratory failure
You are not likely going to get to have a natural birth if you wanted one because it is too stressful on the body and the repetitive fatiguing issue of the muscles pushing so we must have a c-section.
Certain medications will require you to taper down on them or come off them completely during pregnancy; however, this is up to your doctor.
Another this is that the baby could have MG for a short period while in the womb and have little movement which is likely to wear of they say shortly after birth. Moreover, some are also born with MG and have it for about 2 months and this is also likely to wear of about 2 months after birth.
We MGers are also likely to be more fatigued during pregnancy than normal pregnant people and our symptoms may be exacerbated; however, some people have said that their MG seems to “go away’ while pregnant, everyone is different so, I’m hoping to be the latter.
I still have plans to have a baby and we are getting closer each day. We have had some obstacles adjusting medications and with some crisis issues but we are finally getting to some stability and all my doctors are starting to finally focus on it. It feels like a breath of fresh air. Even if we find that we cannot physically have one…if it becomes to demanding on my body, we will adopt. We have too much love to give!