Invisible Disease

This week is invisible disease awareness week. YAY! Although it has not been going to well for me, I have landed in the ER multiple times with hip dislocations and now pelvic dislocations. I am so sick living with Ehlers Danlos.

But, to look on the bright side, I was able to attend, and WALK the Mitowalk in Cambridge/Boston this past Sunday, together 69,000 dollars was raised to help children and adults with Mitochondrial disease. If you don't know what Mitochondrial disease is, it is a variety of defects in the Mitochondria in the cells. Mitochondria are the powerhouses not only for the cells, but for the entire body. Like with Ehlers Danlos is widely varying and is not curable. In my first year at Simmons College, I had the pleasure of meeting Liz, who has a Mito disease our bond of friendship has become very strong and yet different (in a good way) than my 'normal' friends. We know how each other feels when we have issues or new problems to deal with.

However - I must get going - Fawn Le May

Little More than 24 Hours Away...

I am the first case on August 31st, I have to be in Waltham at 6:15 AM, meaning I have to leave at 4:15 AM, yucky time and most likely will get little to no sleep that night, but I can look forward to a good sleep during surgery. I am getting really bad pre - surgery jitters and worrying about getting the medication, however I know I should not have any worry as they are going to two different strengths and Dr. Holovacs does not want much to any Tylenol in the medication at all - my poor liver.

Speaking of medication I have been worrying a little about the amount I have been needing, especially after what seemed like a simple ankle sprain/possible toren ankle ligaments and have decided to go without any pain medication til surgery I am going to try to do as much as I can between now and surgery to keep my mind off of the pain/the pain medication. Along with the lines of pain medication the follow up appointment with the pain management doctor went rather well, we spoke about what different long term medications to use and about getting into a good long term physical therapy program so that I can lower the amount of pain medication I have to use.

I ask that you pray/think of my friend - she has been very sick in the hospital. Thank you.

I apologize once again for not posting as often as I would like, or write as much I could however I am really tired as I went shopping today and went to the Museum of Science yesterday with Jason - it was okay, but is rather over geared towards kids. I will probably be writing once again tomorrow as I probably won't be able to sleep (Which really isn't the best before surgery and to started the recovery process) from the nerves.

One final word, if you are on this blog to read about my condition and claim I don't have it or harass myself or boyfriend or friends, than block me, don't read it. Back off, leave use alone. That is all, act mature and don't claim that we are the drama - thanks.

- Fawn Le May

Living with Ehlers Danlos

My laterjet got moved up to August 31st, I am now 6 days away from my left shoulder getting fixed. Recently I have been really fustrated with living this condition. It really has made me depressed, but at the same thing it has some, actually many positives. And I have been founding myself more often than not looking and the negatives and what I cannot do rather than what having Ehlers Danlos has done for me.

First off, the bonds of friendship that I have made, online and in person are stronger than many other friendships that I know, and compared to the other friendships between myself and other friends - I have been connected to some of the best most respectable people I know. I may never see them in person, but they know exactly how I am feeling at my lows and highs with living with this illness,


Second: Although this may sound like the illness is defining me, I wouldn't be where and who I am today without it. The struggle to get diagonsis and get the best treatment I can, I want to not so much 'overcome' this illness but to live with it, to thrive with it. I know, and have begun how to live with it, not just the good days, but the bad days. But it has made me a very strong person that I am today, I wouldn't have so much motivation and push to get through school and to get through certain things in life because of this. I don't think I would be who I am mentally wise if wasn't for this illness.

I appoligize for the longness between posts, but I must get going, I am rather tired.

- Fawn Le May

Coming of Terms

So, Sept 25th, I have decided that I am doing the laterjet on my left shoulder, it has recently been causing issues, and has had become apparent that I do need to do it on the left. I had been pondering weather or not to do it as a preventive measure or just for long term relief but my left shoulder has made itself clear that it wants to be surgically fixed sooner than later. Dr. Holvacs will be performing it, just as he had done on my right. I know I am in for quite a bit of pain and quite a bit of rehab, as my right is still not a 100 percent there. But I have had fantastic results with it thus far and actually have gotten to the paoint that I do not need to worry about my shoulder anymore. I don't need to me cautious or worry about it dislocating because I move it a certain way. However, I am tired and I must be up early (7 AM) So I am going to go to bed earlier tonight (1 AM - ha!) - Fawn Le May

HMOs

At this point I do not feel human. My HMO basically told all my doctors to not give me narcotic pain medications anymore - they sent every doctor I have seen in the past so many months. I feel nonhuman. I feel demoralize, disrespected, labelled as a drug seeker. I just want pain relief, I do not abuse them, I do not do anything I am not supposed. I take them as directed - I am beyond any point I have ever felt before. Thankfully my PCP is sending me to a new pain doctor hopefully I won't get Cymbalta stuffed down my thoart again. I am also considering seeing a rhumeotolgist. I really wish I didn't have to go through this, but what scares me more is that I am NOT alone there are so many people who have to go through hoops to get the care they need. I really am beginning to find the meaning in my life - and possibly a career. I am considering becoming a disability lawyer or dealing with patient advocacy on a higher level than just the hospital. I really feel that chronic patients are ignored, almost left to die or left to the point to want to die. I feel that this is so wrong. I feel that we have the technology, the ability to help these patients live near to normal lives. I do not expect to live a normal life, but I want to function as much as possible. I want to be able to feel like the 21 year old that I am at least once a month twice to thrice a month would be GREAT. Sigh, I just really needed to vent. I apologize for the long breaks between posts.

- Fawn Le May

T.J. Maxx

I started at T.J. Maxx Tuesday, worked 4 - 9, it went pretty well a little frustrating but not surprised considering it was my first night. I think I can handle it if they can keep my hours fairly consistent, not so much the days but the hours I work I can handle it and keeping up with my doctors appointments I am hoping that it is going to continue to be nights like it is now so that I can just do the appointments for now. I am sorry for the lack updates and the shortness of this one, but I am very tired and work again tomorrow (5 to close). So I will update an other time, hopefully sooner than the last few stretches. - Fawn Le May

Got a Job!

I was hired at T.J. Maxx! YES! For having a job, I start Tuesday, 4 - 9:30 I start at 8 dollars an hour and will be working 25 - 30 hours a week, depending how I do will depend on how well I work out, and I am hoping I will I can continue in the fall. I REALLY hope I will work out - I really want to keep the job down, I miss working and I really need the money because of my medical stuff and school. I am sure I will work out, I am pleasant to work with and work hard and can multitask, I just need to figure what the managers do and do not like, which I am sure I will be able to figure out quickly. I REALLY need to keep it, or you know who will go crazy again at me, but I can't control everything. However - I do not have much time. - Fawn Le May