Making It: My Health Story and Bits of Advice

This blog is here not just to talk to you about the things I make, but how I, as an individual with disabilities, make it through daily living. There aren't enough voices for people with disabilities out there, and if there's any way I can make a difference, I am going to do my best. I have learned that as a patient, you are your own best advocate.

If you are someone like me, what does that mean? It can mean that some days your struggle is lonely because doctor after doctor disregards you. It requires intelligent research. When you finally get a solid lead or a diagnosis that sounds like it fits you, get to the library! Search through scholarly articles like it is your job! (If you have access to those search engines because of school, fantastic!) Google specialists, trials, support groups, anything that could help you learn and make a positive difference in your life. I also like using the pages of reputable organizations that support a chronic disease or condition to learn more about it. How do you know which are the good and bad? Check the sources. Did a doctor write it? Did the person compiling the information cite their references? These are key questions to ask.

Here is a little background on my story, taken partially from an old entry on a different blog: 

I was born with klippel-trenaunay syndrome/venous malformations in my right leg. They are benign vascular tumors that swell with blood, replace the muscle in my leg, and span from my upper knee to my hip. It's not a hereditary disease, and it's very different in every patient who has it. Some patients may have lesions on their skin, others have vast differences in the length and width of their limbs, some cases are more severe, and some are less severe. (They can appear in the arms as well as the legs.)

It also effects the ability of each person uniquely. For the following reasons, I have difficulty walking:

1. The effected leg has less muscle than a normal leg.

2. Some of the tumors interfere with the knee joint.

3. The tumors are very painful. Some days are better than others; it varies greatly, even within a day. I can sometimes predict what will cause pain or physical stress, but it's often unpredictable. 

A few of those predictable things that effect my condition negatively are increases in estrogen, remaining in any one position for extended periods of time, overuse, under-use, and changes in elevation/pressure. 

Here is what my leg looks like:

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 When I first moved to the Bay Area from Chicago, it took me a long time to find a good doctor, but I was very thankful to find an amazing pain clinic that gave complete care and had me on a good treatment plan. Unfortunately, when I turned 26, my insurance under my parents ended, and I had no choice but to switch to the insurance that my work offered. Because of my pain issues, I have been on a medication that is a narcotic for years, and the clinic I like decided to a) keep me on it and b) increase the dosage. It was not their idea to have me on this long term (i.e. the rest of my life/many more years). It is too short acting of a medication. I imagine as it failed, they would explore other medicinal options, and as those failed, I was personally pushing for a spinal implant when things got bad enough at that very last step. She also used diet, herbal supplements, and psychological therapy as part of the regimen.

Unrelated to the pain, I also have legitimate mobility issues. My ability to walk wanes more and more every year. I can do short spurts, but the longer I use it, the more I limp, and at a point, the leg gives out completely due to a combination of the lack of muscle mass and the swelling. (I use a wheelchair about half of the time.) Many people ask if I could build up the muscle to make up for it, but the two things inhibiting that are the following:

a) it can only take so much activity before it is swollen to a point where it is useless, and

b) imagine if all of those white spots in the MRIs were removed---my leg would be like Swiss cheese. It's not a matter of it being slightly deficient; the muscle never grew where it was supposed to.

Other people ask if I have used a compression garment or tried PT. Yes, I have tried a compression garment, and my lack of success was because of the span; it was only thigh high. I recently found full tights, so I am looking to have more success with those. I will answer the second portion in a moment.

When I moved to the new insurance company because of my work, I thought I could no longer afford my old doctor, and when I tried to introduce myself to various new doctors, (it is a company where all of the doctors, hospitals, pharmacies--everything--are enclosed in one system, under one name, and you cannot leave it,) I wasn't just met with the understandable hesitation I expected, but I was given the wrong dosages of my medication, unclear information, told my case was too complicated, and told repeatedly that "new institution", in different forms, was moving away from narcotics as a whole.

When I presented my case, I explained to them my conditions (I also have a non-epileptic seizure disorder), the issues it caused me, (not just pain but physical impedance,) and how I needed complete care. Yes, I needed the medication I am on for the meantime, but I also need PT, a better wheelchair, opinions about my hip and back pain, suggestions about better medications for the future, and answers to why I was having severe digestive issues.

My first two doctors tried to give me another standard wheelchair from a medical supply company even though I specifically said I needed a PT to fit me for a better wheelchair than what I had from a company like TiLite (the chair for which my parents and I ended up splitting the cost.) I never got a PT referral from the first two in general. All of them have ignored or taken back what they said about my back issues. Only this last one is sort of paying attention to my mobility issues and referred me to a PT and person to figure out the digestive portion. (It's an unpleasant procedure, but I am happy it is being investigated.)

  Angelic Pretty Model RinRin Doll and I with the personalized key necklaces I made for her and I, and me in my sweet new Aero T chair from TiLite! I'm wearing the Sweet Girl Room OP by Angelic Pretty; I picked the key as the item from the print, and then I designed the key to my liking. You may also recognize the pendant on my cane from the main page, made by me. :)

 

Angelic Pretty Model RinRin Doll and I with the personalized key necklaces I made for her and I, and me in my sweet new Aero T chair from TiLite! I'm wearing the Sweet Girl Room OP by Angelic Pretty; I picked the key as the item from the print, and then I designed the key to my liking. You may also recognize the pendant on my cane from the main page, made by me. :)

This last doctor also did not want/neglected to refill my medication when I requested a refill. With this new institution, you have to wait until the app says you are allowed to request a refill--normal. This is typical for any medication. I filled it on the 23rd of August, and on the 11th of September, I noticed I was a little low, but not out, so I requested a refill as the app said I was allowed to do so. (I thought to myself, too many times, I let myself get to the last pill or two and get in a bind, not going to let that happen again.) On Friday, the 12th, I had an appointment with my doctor, so I thought it would be perfect timing. We had one appointment previously, but it was over the phone, I figured it would be good for us to meet, and I had clearly a variety of issues to discuss. I also put in for a refill for my other medication because I noticed it was up for a refill too.

The medical assistant noted my Rx requests in the system when she saw me, and usually at new institution, at the end of an appointment, you can go to the pharmacy, and pick up you medications. The doctor and I had a mostly good discussion, but he reiterated what he did on the phone the couple weeks or so before about narcotic medication. I told him about my orientation with the pain clinic, my old pain clinic, and my desire to find other methods for pain relief as I was concerned about what this one was doing to my body and it's decreased effectiveness. I was told some general information and that the pain clinic would handle this kind of thing, an appointment I would not have until October 3rd. He also, like the other doctors, did not have an interest in requesting my records from my doctor who was outside of this institution and therefore to which had no access.

Directly after my visit, I went to the pharmacy, the Rx has not been approved, and the other, my seizure medication will take some time because it is a special order. (I am sensitive to the generic and need the brand name.) By Monday, the 15, I am out of my medication. I had noted to him and his assistant that the medication is becoming less effective, as expected, so some days I can manage with the 2 pills a day, but others I take 3. On a terrible day once, I had to take 4. (That usually happens during that time of the month because of the hormones further worsening everything.) On other days, I'll manage with one and suffer. This is why I can't get it to stretch the entire 30 days, although I try.

On Tuesday, I get a call saying my Rxs are ready. I am already in withdrawal at this point, and I have my SO take me to the pharmacy. Only one medication is ready. My doctor still has not approved the pain medication. I don't actually get the medication until Wednesday evening, and I only find out it is filled because I called. Even though I have it now, I am still very sick and am having trouble eating. When a person goes through withdrawal, it's like food poisoning. Every time I tried to eat, I instantly regretted it. Now, I am afraid to eat, but I am starving. I have some PediaSure to hold me over, and I am hoping by the end today to recover.

Most frustrating of all, I have missed three days of work. That angers me more than anything. Going to my job everyday is my independence. I fought hard to get to the point where I am at, and when I am reduced to feeling like I both a mother worrying constantly about the countless needs of her infant who is also myself because I cannot eat, sleep, and sometimes do things for myself, I feel robbed. My job (in museum education) is one of my passions; I like being there. I need to make money, but if I didn't, I would elect to be there. I take this medication (that I don't like very much) to be a functioning member of society in hopes that there is a better solution out there for me one day. 

There is some positive to all of this. I contacted my old pain clinic, I can afford to see my old doctor without insurance, and they can fit me in next week. To distract myself from the unpleasantness of being ill, I had some opportunity to work on something else I enjoy that applies to this space--3D printing! I'll have to find a way to connect my Instagram feed to here so you can actually see what I have been working on! I also want to thank those of you who have reached out to me on Facebook, the conversation is always appreciated! You keep me company when I'm down!

I don't know what difficulties I will face next or (better yet) what I will overcome, but I would like to continue to share them here with you alongside shop updates, 3D printing adventures, and a frilly thing here and there to keep things light and happy. Everyday, I try to remind myself that whatever I do, to do good. If I've ended the day doing something good, then I can feel okay with myself. When you are feeling stressed about your health like I do a lot and feel like you can't do much, remember this: Make good with your ability. I'll be here to help add the frills. ;)

 

Love,

ElleJay