Monday, March 31, 2014

Social Media Burnout

I have been thinking a great deal over the weekend about the fact that I have pretty much disappeared from a great deal of social media in general diabetes and other social media in general. I have noticed a great deal of me not really being into it all. I think after several years of constant social media I am tired of it all. I know recently with my RA flare-up it really puts things in perspective for me in some ways as well.

 I know at times I love to be connected but other times I feel like I need the time to deal with other aspects of life. I know with me being so tired some of the Facebook  updates of my old friends seem very unimportant but at least the diabetic advocates updates have purpose. Social media is almost feels over done. I think I am definatly burnt out on social media. I love the diabetic advocates and diabetics in the doc but I know I have slowly been drawing myself away recently.

I love being involved in the diabetic community but recently I have felt like everything has been too much. Honestly having less energy and very little energy makes me also value the time I do have. So I know I would love to join in more but right now I think I just need a time out of sorts to get to a place again where I feel like sharing and joining in. These days with me barely keeping up my life in general and adding more things on that I feel I need to do feels like it is just way too much for me.

I know my blog has not been as consistent because of all the aspects of my life getting even bussier. I am trying to get myself back to where I enjoy social media like I used too. I am hoping in the next couple of weeks I can get myself to where I like to be. I have enjoyed my interaction with each of you and I hope you understand that social media can burn you out and at times I think the only cures is a break from it all.

Friday, March 28, 2014

Wonky Test Results

I know yesterday I got the test results for the recent blood work. As usual I am not testing positive for all the typical Rheumatoid Arthritis tests which has been that way since the beginning. I go through this every-time I go to a new Rheumatologist they are surprised by the lab results but I know my mom never  had all the test come back positive either. In fact a great deal of people who are diagnosed with Rheumatoid Arthritis only test positive for some of the tests. So it is really through tests, examinations, and family history they used to diagnose the Rheumatoid Arthritis. So it can be tricky when my results don't always match up with what they expect. Normally after they review the case they see that the original diagnosis does fit. I know it can be tricky being the patient with the RA diagnosis and when it is a Dr. using what information they have to diagnose the condition. I know they always seem to think I have lupus but I don't have the typical symptoms or issues but my symptoms do match RA.

So I know my next appointment the Dr I am sure will want to run more tests which normally happens. I know they normally try to test for quite a few other autoimmune diseases such as lupus,Sj√∂gren’s syndrome, myositis and scleroderma. The bad part of lab results vary as well and can cause issues with the types of the tests the Rheumatologist are running. So this whole process is honestly drives me crazy because even if I had other medical records from my previous Rheumatologist they would still be rerunning them again from experiences. The good part is that I am currently on the drugs and I am seeing results which will also good for the Rheumatologist to see as well. 

So I am sure I not done with the test but that is okay. One major issue I have noticed with taking Methotrexate is that it is causing mood changes but one benefit it the first two nights after taking Methotrexate my blood sugars flat line around 80-90 range through the whole night with no lows which is always nice. I am not sure why the drug is doing it but it really can be so nice to sleep all night with no interuptions.

Thursday, March 27, 2014

Need More Time

I have been feeling with my recent RA flare-up that I really need to give myself more time for me. I have been pushing myself too much for a job that has not appreciate of all the hard work and the months of overtime I have done to help the department get all the work done. I know in the long run if I continue at this pace I will end up hurting myself financially because of emergency room visits or increased Dr visits. I know if could go back to just working not as many hours I would be allowing my body to handle all the stress that are thrown my way.

 I think the past two years I have been slinking by but not really allowing my body the rest . I know since I do have issues I feel this obligation to give so much more than others might but I now feel nothing but regret for the decision because I will never be appreciated or understood. I am working on finding a better work option that will allow me to properly care for Duchess and myself but also enjoy our lives more than we currently do. I feel stuck and quite unhappy with where I am at and I know I deserve better. My RA flare-up is a great reminder of why I need to leave. I know my boss said I looked fine and she had not idea I was in bad pain. The interesting thing is that an old manager I had noticed how tired I looked and told me I should use more of my sick leave if I need too. She said I looked exhausted and not quite like myself.

I guess that tells you a great deal about how little they notice but I also need to in some ways show when I am tired instead of covering things up. I have always been bad about showing if I am sick or not allowing people to know when I am in pain because I like to deal with things on my own. I know I need to work on better communication during these times but I also knew that the response would be lackluster as well. I know I don't really explain how difficult diabetes is to those around me because I find some will not really understand. I know when I had seizures at work several years back I know a coworker at the time said the event really made her understand how complicated it was but also how much work must be involved as well. I know as time goes on people tend to forget these events which makes things more difficult.

Tuesday, March 25, 2014

Local Diabetes Meet ups

I have been in a meet up group locally for several years. For a while it was run by a younger woman who then got engaged and was then busy planning her wedding so she stepped down on running the meet ups. The group was on meetup.com which made it easier for people to find. I there was quite a monthly expense to keep the meet profile active. So the person who took it over decided to look for a sponsor of the group. They did find a diabetic organization to fund the monthly fees that keep the meets up active and allows for further meet ups. The problem is that they have ruined the meet up group in many ways. They are constantly throwing the fundraising events for the group as a meet up we all should be going to. I volunteer when I want and don't feel that pushing it on people is appropriate either. They don't have very many meet ups that allow for interaction between the people in the meet up groups except for an occasional pot luck. I like pot lucks but the issue I have is that taking a service dog to another persons home is very difficult. I hate to impose but I am not willing to leave Duchess at home either. So I rarely ever get to attend the meet ups.

I always enjoyed the meet ups when I am able to attend but it is sad how a very well know diabetes non profit organization has really ruined the meet up group for all. I am thankful they took over the funding of the site but sad that they have pushed their agenda too much into the group. I know a great deal of the original people from the group rarely attend anymore. I wish we had found a different sponsor who is not as pushy with their agenda. I really never thought a group sponsoring would think they had rights to put all their events on the calendar but I should have guessed because they are a board member of this organization. I am not a fan of the organizer of this group because he has on occasion expressed his dislike of Duchess but what I think the real issue is that when you see someone with diabetic complications it is scary. I know because his daughter has it as well that I am sure that is scary but realizing that things happen is also part of life. I know I miss the days when I could attend events that were not centered around an organization but rather a meet up of a group of people of diabetes who want to hang out.

Monday, March 24, 2014

Satisfied With Improvements So Far

It is so nice to wake up today and my knuckles are not bright red at every joint. My body is not quite as tired as last week I am still resting and when running errands was really tired afterwards but overall I am starting to feel like I can take on a little more. I am not back to my regular self where I finish up everything I normally do around the house but I will get there. I am cleaning but splitting it up over several days like cleaning the bath room one day next day steam cleaning my floors or vacuuming one day. That way everything is not quite as overwhelming. Last week after coming home from work some days I would cook dinner and I was wiped out after cleaning up and eating.

I know this week I am no expecting a dramatic change in my energy over the next couple of weeks I will really start to regain my energy and ability to take on more tasks. I do feel much more confident about things verses last week which is good. I have had two nights after taking the Methotrexate where I felt a little dizzy but I am not sure if that will go away or not. I will find out Thursday night once I take the Methotrexate again if that will be a side effect that might be around for a while. I am hoping not but I will see.

Taking predisone has been interesting. I have been able to keep my blood sugars under 158 the whole time which is really good. I did lower my high threshold to reduce a big rise in my A1c rates because of the predisone for me what has really helped is that I use my food calculator on my pump and I take the units and do injections of units for example 4 units and let say .60 and then I sent the .60 through the pump. I know it seems to keep the blood sugars from soaring or moving quickly. I also increased the pre-bolus time to reduce a rise of bloods sugars well.

I want to keep things tightly controlled as possible. I know my Alc is coming up soon and I want to keep things in tight of control as possible. My Endocrinologist know I needed to take predisone and supported my decision to do so. They expect some rise so I am not too worried because they understand that I am going to do my best. My Alc are usually in range so a slight rise will not throw me off too much. I know I like to keep things well controlled with having the Retinopathy but everything seem to be fine right now. Overall things are much improved and can't wait for things to return to normal. I know things are pretty good right now but I am taking things easy and not pushing myself too much like I was the first week I had at the beginning of my flare up. I know I tend to push myself too much as it is but I am glad I have given myself the rest I need to handle most of what I need to get done.

Friday, March 21, 2014

Rheumatologist Appointment

I am very happy that the Dr. decided that I was going to be put on Methotrexate for my Rheumatoid Arthritis and thankfully it has no impact on vision. The bonus of taking Methotrexate is that it reduces the chances of heart disease as well but also most importantly it helps prevent further damage to my joints. The bad news is that my left wrists looks like it has some permanent damage from RA. There is also some possible permanent damage in my ankles as well. That is all less than ideal but I just hit 15 years of having RA and am not really surprised but the Dr. seemed more upset about it than me but I guess I expect some damage. I know my Diabetes has taught me that you do your best but you can't prevent it all. All your can do at the end of the day is did your best job you could do. I know my mom experienced some permanent damage to her joints as well. Thankfully not taking plaquenil like I have in the past this drug prevents further damage and also deals with the inflammation as well. Where plaquenil affected the eyes and only dealt with inflammation symptoms. I did a whole bunch of blood work and x-rays to examine what damage has been done and to better help them determine if I need a biologic drug as well most people probably know them as Humira from all the commercials.

I was a little overwhelmed with Methotrexate being a chemo drug. The difference is that I am taking a small dose and they are taking large doses during Chemo. There is a slight increase in a few more hairs lost than usual every month but overall very little hair loss. Most people do well on Methotrexate and with few side effects and I hoping for the same. I did do my home work and was not really sure what drugs they would start me on. The intresting thing about Methotrexate affects you folic acid levels so a prescription of folic acid is required by my Dr. which makes sense. There is some real negatives if you are wanting to have children you can't take the drug until you have been off the drug for at least 90 days. Overall it is weird to think that sending poison into your system would be effective but it seems to be so.

The bad part for me is that to get results quickly I need to take predisone which can cause issues for blood sugar but the Dr. left the decision up to me. She normally never does for diabetics but she said my hands looked like they were painful for me to use. So I decided to go for it because in the past I have gotten my energy back and felt better withing a day or two of starting predisone. Thankfully so far my blood sugars have been pretty good overnight they were normal. I was having a great deal of lows this week but now it seem today I am staying around 95 straight across my Dexcom which is what I like to see. Hoping to keep ahead of bad highs if at all possible. I did call my endocrinologist and they wanted me to send my Dexcom information weekly to help me make the process easier in the long run. My PA said she was happy i picked to go with the predisone because if I had great results using it in the past and helped reduce the pain they thought it was a reasonable thing to do. So overall my visit to the Rheumatologist has been good but I guess I will see over the next couple of weeks to next couple of months if the Methotrexate is work for me or not. I am hopeful to have good results and it would be great to get back to feeling like myself again. Plus I would love to get back to the gym again.

Wednesday, March 19, 2014

Even More Thankful for the Good Days

I know having RA flare up creates a great deal of obstacles which I have faced over the past 15 years. One big obstacle for during an Rheumatoid Arthritis flare-up is I have trouble walking up stairs, trouble opening bags or using hands at times, issues with repetitive motions. I know when I was 19 years old it was my first year of college. I know everything started out great until January when I started noticing little issues with pain in my knees and stiffness. I know the college had this long stair way to get into the college and one day I new for sure their was an issue. I could not walk all the way up the stair way without being in a great deal of pain. I was exhausted and irritable. I know I was noticing how much effort it was taking me to just get up the stairs that I used to fly up and now I had to stop several times before I would make it to the top of the stairs. I know back then I was really scared as to why this could be happening. I did tell my mom right away and she took me to her Rheumatologist who diagnosed me with RA after some tests and examinations. I know my mother like me had RA and my great grandmother also had RA. Here RA was so bad that her fingers curved to the sides because of the joint damage.

Thankfully my joints all look normal but I also know when I have a flare up that it is doing damage to my joints. I am really thankful that most of the time my RA does not seem to affect my blood sugars much except when on steroids but hopefully I can get off of them quickly and get back to my normal energy levels soon. Having RA really makes me appreciate the times when my body is functioning at a a normal levels. When it is not it become really frustrating and creates issues for me a work and home. I know currently I am very thankful for each day that is pain free for my joints and I know the days that are not our a great reminder of why I should be thankful for all the good days I do have. I try my best to keep things in perspective but this time my RA caught me off guard and I have struggled a great deal more with the feelings of anger and resentment because of my lack of energy. Thankfully I know feel like I am in a better place because I realized that I also need to be a little nicer to myself during a flare up and allow myself the time to rest.

Monday, March 17, 2014

Dealing with RA

Thank you for your patience. I have been dealing with a Rheumatoid Arthritis flare up and have not been handling it all that well. I know in fact I have been quite angry about it in general which not my normal response but I know I already have so much on my plate I can see why I had this reaction. I get angry mostly because an RA flare up equals me being exhausted and feverish. My body hurts a great deal and I feel very cranky and testy. By the time I get home every night I am exhausted cooking dinner or getting anything else done becomes really difficult. This past weekend I ran a couple of errands and have to come back home for a bit to take a nap so I could finish running my remaining errands. It is really sad how little energy I have during an RA flare up. I know I am frustrated with the fact the one of the few medications I can take affects my eyes and after getting my retinopathy where it should be I am not wanting to take any risks with my eyes even if it equals more issues with my RA. I am hoping to find another medication without the risks to my eyes but that will be effective to help me prevent further flare ups if possible. I am not sure what my appointment will bring but most of the time I get prescribed steroids which help with the symptoms of the flare ups but do some damage to my blood sugars.

I think when you are handling several autoimmune issues things can get very complicated so quickly and you have to make choices like I have made in the past to not do treatments because the side effects of the treatments are not worth it in the long run. So I am really hoping they have some options that are better than last time I went to a Rheumatologist. I am so tired these days which are now equaling a great deal more lows which is less than ideal. I have been trying to hard to keep up with everything when I should be trying to rest. So I have decided that things must wait till I have the energy to deal with them. I am extremely tired and hoping for some pain relief. As I am typing this right now it is very painful and less than ideal but doing administrative work I have to deal with the pain so I can get my job done but that makes for a very long day.

Emotionally this has been a very rough period of time so I am trying my best to keep things as positive as possible but can be difficult with my job increasing expecting more and more of me when my body is already a full capacity and can't really handle much more at this time.

Tuesday, March 11, 2014

What I feel During Lows

I have been thinking a great deal about what I miss. I really miss the ability to feel my own lows. I know it seems the longer I have Hypoglycemia Unawareness the more it changes. At first when it started I could not feel lows but could feels highs but now I can't feel either. In fact a low for me these days I have no fast heart beat, I rarely ever sweat, I don't shake, I don't get hungry, I don't get grumpy, I don't get moody in general. One really scary part is that when I see a 17 on my test kit in my mind I am not at all panicked which is scary but I think that also relates back to not having the fast heart beat and shaking which I know always spurred me into action. It is shocking to me that everyone else is panicking but I am so calm about it all. I also these days when I am high I feel a little bit like I am off similar to a low which is strange. I tend to feel high at times when I am low like someone short circuited my system. The longer I have Unawareness the more difficult it seems to get.

What I am low this is what I get at times I feel nothing at all in fact will be in the middle of something and Duchess alerts. I am will be astonished at how there was not signs of being low. Other times I might get a little foggy and have a little trouble concentrating. The fogginess tends to creep up on me and once foggy things tend to go down hill quickly. I know Duchess tends to be able to bring me out of my fogginess when necessary which is good. She tends to make it clear that I need to do something when low I can forget I need to do something quickly at times. I know once or twice a year I might get a slight shaking but it scares the crap out of me because it happens so infrequently. I usually don't get the fast heart beat when low at all in the past 6 years. I find it interesting how much we rely on the ability to know when things are dangerous when low and how quickly we should react to the situation.

Monday, March 10, 2014

It Snuck Up On Me

I have been extremely tired recently and I knew something was off but not sure what. I know my insulin basal rates have increased dramatically in general. Things seemed to be flopping around pretty dramatically but I could not figure out why. Over the past couple of months I have noticed that when at the grocery store I was having issues with opening the bags for fruits and vegetables. I noticed this activity seemed to take me quite a bit of time to just get the bad open. I can pick up things pretty well but just when at the grocery store was I noticing this issue. I have had Rheumatoid Arthritis since I was 19. I for the most part do not have a great deal of issues with my RA but on occasions I will get a flare up of my condition and that's where I run into issues. I know this morning I woke up all the joints in my hands and collar bone were painful to move. The more I move around eventually it is not as bad but during a flare up that is not always the case. The number one drug they give me during a flare up is predisone which destroys my blood sugars. I fight highs frequently when on predisone and tend to gain weight. I am hoping that this is not a true flare up but it feel like the start of one. All I know is that today has been a painful start to the week.

I know using the computer on days like these makes for a really long day and I will muddle through. I know in part the reason this is happening. I have not been on RA medication for several years because of my Retinopathy. Some of the drugs I have been prescribed can cause eye issues and with my proliferative diabetic retinopathy I don't want to risk it. I know there is quite a few drugs on the market but my last Dr. did not seem to want to put me on anything. I am worried with the changes in my ability to open certain things is not a really good sign. I have had RA for 15 years and it does do damage. I am hoping they have a drug to help but that does not cause issues with my eyes. At this point I am choosing to take care of my eyes first and my joints second if I have to make that choice. Hopefully I can get an appointment for my Dr.soon to review what options I do have. I am just not willing to risk more issues with my eyes after all the hard work to keep my eyes in good condition. I want to keep my current 20/20 vision as long as possible.

Friday, March 7, 2014

Choosing to Disagree

Re posting blog again because I still am seeing quite a bit of bad ideas which could affect the service dog community.

 With the growing trend of people flocking to get diabetic alert dogs I have also seen a growing trend of bad ideas from people training their own diabetic alert dogs. Recently I was on an online forum and a young woman was asking questions about alerts for her diabetic alert dog. I know she said she wanted the dog to alert by barking. That is the kind of alert that will get you kicked out of business. I know some people will argue that that is acceptable but it is not. A service dog should always be as transparent as possible. They are here to help us but quietly when ever possible. The whole idea even though it does not always work that way is to blend in as much as possible which means being quite and well behaved. A dog barking in the middle of a movie will get you kicked out for sure. I know I was warned by my movie theater if my dog barked I would be kicked out and that is true for most places. Barking is not an acceptable alert because it disrupts the general public.

                     A diabetic alert dog can be trained to have several alert levels for example Duchess will start off with a lick on my hand then proceeds to a pawing of the legs or calf and then finally pawing at my chest. If I am unresponsive still she will get me help. When I am at the office she will alert with a bringsel because the alert is more clear to my coworkers and she will tell them if I don't respond. This has really helped to get me help much faster. I know each diabetic alert dog team is different and so our their alerts but barking goes against service dog etiquette that should be followed. I know someone on the forum said he wants his dog to bark in case of emergency but I think this creates more a spectacle and also would stress the dog out as well as others. I know Duchess had been through emergencies with me but never barks but still gets me help so I disagree completely with the excuse to use barking. I know Duchess will scratch on door, whine other things to get attention without barking.


Also I am guest posting today on Diabetesmine. Here is a link to the article. Thanks again Mike it was wonderful meeting you in person and loved working with you on the guest post.

http://www.diabetesmine.com/2013/08/sniffing-out-the-d-alert-dog-experience.html

Thursday, March 6, 2014

Six Years Later

On Saturday March 08,2008 is the six year anniversary of my mother's passing. I know I have been incredibly deep in thought the past week or so my blogs may have been a little shorter. I know losing my mother who also was a type 1 diabetic has been incredibly difficult. She did not die of complications but had rheumatic fever as a child that was never treated. Rheumatic fever if not treated causes permanent damage to the heart valves. When she first got ill they thought she had kidney failure which made no sense because she had great control of her diabetes and normally had normal kidney function. So they kept track of her kidneys but she was continually getting worse. I know when I went home for Christmas the previous year I was thinking it was a heart issues because in the past she had some issues but the Cardiologist said that she was fine and ran not tests. I was pretty angry because I think he thought the kidney issue was because she was diabetic and the problem was solved.

I know she got better for a while then a couple months later she become sick again. This time the Dr. she worked for was reviewing her labs, tests and other information in hopes of helping her. My mother was a nurse for many years her Dr. she worked for was also a type 1 diabetic as well. The Dr. thought she needed to go back to check her heart and other things to make sure something was not missed. Sure enough on March 07, 2008 my mother called me. She told me they finally found out what was wrong her heart was failing and her kidneys were shutting down. She would need a heart and kidney transplant. She was added to the list that day. I know when I heard that my heart was broken. I know full well if she had not been diabetic they would have run more tests to find out why instead of saying diabetes equal kidney failure in all cases. This is a great example of several Dr's not doing their jobs and just passing it off as a complication because they had no idea what was wrong. They did determine her rheumatic fever is why the kidney's were failing not her diabetes.

I know that even if she had lived longer it would not have been an easy road for my mother. I know at her funeral when her patients she dealt with attended her funeral it really told you a great deal about my mother. She was an incredible person who impacted so many who knew her. I know I still struggle today not being able to pick up the phone and call her when having issues. I know this past year I had so many obstacles at work and she always had such great advice. I will always miss our times together. I really wish I had more years with her she was only 52 years old when she passed and it just feels like not enough. I know the hardest part of her death was that I now was faced with the reality that being diabetic we really are so much more vulnerable when we are sick. I know my mother is currently in a better place but I know all her kids will always love her and miss her.

Wednesday, March 5, 2014

Infusion Set Issues-Occlusion

I have noticed since I got a new order of infusion sets from Animas. I think I got a bad box because every infusion set has only lasted several hours before it says occlusion and each time I had also had a refilled the cartridge and the tubing was the one that came with the set. So each time I examine the tubing to see if it was just an air bubble which can cause an occlusion but there was not bubbles. There were not bubbles in the cartridge either. So I am not sure why the sets keep failing but I rather annoyed because it had several occlusions overnight which means I don't get to sleep much because I am constantly up and taking care of the infusion set issues which takes twice as long when you are half asleep and really would rather be sleeping. I know recently I have been feeling rather tired and this is another reason why. I know I plan on contacting Animas about the bad box of infusion sets. The other box I used one from did not have any issues with.

I know even Duchess after all the middle of the night issues was pretty cranky and I am as well. Hopefully I can get the bad one's replaced with some new ones. I know I have put that box to the side so I don't use anymore of the bad sets because honestly being a diabetic I already get poor sleep but adding bad sets just makes things more complicated. I am tired and after all the other stressful events I really rather need more sleep and not the opposite.

Monday, March 3, 2014

Slipping Back Into Old Habits

Over the past several years I have felt pretty good about the fact that my old eating disorder did not seem to be a real big issue. I know when it starts to creep back in my life. I have been under so much stress and that can set the wheel turning for me. I know recently I went to the Dr. and I wanted to know the number. I always tell the nurses not to tell me my weight because if I know the number that can set off this mental struggle for me where I need to eat less and exercise long period of time. I will exercise for hours and hours and eat very little. My condition is called exercise anorexia which is pretty common. I tend to highly focus on my weight even though my clothes will fit great the number for me is a huge issue. I know the more criticism I have been getting at work the more I feel insecure and it has started the wheels up again in many ways. I don't know my weight but I have this urge I need to work out and work out which is not easy for me. I know I need to change my current environment by changing jobs to where I feel not so criticized in general. I am a true Type A personality and a perfectionist is what I strive for but that is extremely difficult when you want to be the perfect weight. I know full well that I need to just be healthy but it is incredibly difficult since I joined the gym again recently and now can exercise more often regardless of the weather.

 I am doing things now to help get me back into balance but still able to exercise but not too extreme's. I do have things I follow such as not weighing myself and eating healthy not matter what size I am. I do try to be active but not let things get out of control to where I need to exercise 7 days a week and I know if I don't get a handle on things I can be headed down that path now. I am always working on keeping myself more mellow about my weight and concentrate more on what I am eating and if I am active enough. This normally helps me to keep in a healthy weight range. I have gained some weight but I know that is due to all the stress and the pressure I have been feeling recently. I have increased my exercise slightly but still within a healthy range. I know I need to tread lightly right now and I know trying to spend as little time at work and spend more time doing more things for myself in the long run will help me to get my thought process back to a healthier place. I am striving to get back their but honestly I was not expecting to slip back into it so quickly.